[Stephanie Williams]

GAAPP Academy is proud to present our upcoming free webinar: “Young Voices, Real Power: Mobilizing Youth in Patient Advocacy.”

Join us to discover how to bridge the gap between emerging and experienced leaders to build more resilient and impactful patient organizations.

In this session, we will explore:
✅ How young advocates can be an essential part of the current leadership landscape.
✅ Practical approaches to empowering youth in decision-making roles.
✅ How collaboration between generations creates sustainable growth for patient organizations.

📅 Date: August 25
🕒 Time: 15:00 CEST
📍 Where: Zoom (Free to attend)
🎤 Speaker: Vincent Mugwati – Medical Student & Youth Leader, Rare Diseases International

👉 Secure your spot and register now: https://lnkd.in/edFCmTdg

Hope to see you there!

[Victor Wutor]

AMEA-GAAPP in Nairobi was a truly educational and inspiring experience, offering rich learning opportunities, valuable insights from participants across different countries, and unique African solutions to African problems. Patient advocacy in Ghana (like many other African countries) faces major barriers in awareness, funding, and sustained participation, but it also has strong opportunities through professional leadership, community trust, and policy reform.

Challenges: low public awareness, limited resources, and uneven access to decision-makers can weaken patient voices.
Opportunities: stronger coalitions, digital outreach, and health-policy engagement can turn advocacy into real system change.

[Bruna Rocha Pedroso]

🌍 AMEA Meeting 2026 — Let’s keep the conversation going here!
In Nairobi, member organizations of the Africa Middle East Alliance (AMEA) came together to strengthen patient advocacy and build stronger connections across the region.
The meeting created an opportunity for organizations to share experiences, learn from one another, and explore common challenges and opportunities for advancing the patient voice across Africa and the Middle East.
This meeting is just the beginning. We want to hear from you: how does this conversation resonate with your organization’s reality?
💬 Tell the community: what challenges and opportunities do you see for patient advocacy in your country?
💬 What is one idea, experience, or practice from the AMEA meeting that you would like to take back to your organization?
💬 What would you like to see strengthened or explored at the next AMEA meeting?
Join the conversation below — your experience could inspire another organization facing a similar challenge. 👇

[Bruna Rocha Pedroso]

¡SAREAL 2026 — Sigamos construyendo juntos! 🚀
Durante estos días en Panamá, organizaciones de toda América Latina se reunieron en SAREAL 2026 para aprender, compartir experiencias y explorar nuevas formas de fortalecer la defensa de los pacientes.
Juntos descubrimos cómo la Inteligencia Artificial puede convertirse en una aliada para la incidencia, transformamos ideas en proyectos concretos para nuestras organizaciones y fortalecimos una red de personas comprometidas con generar un cambio real.
Pero SAREAL no termina cuando regresamos a casa. Ahora comienza la parte más importante: convertir esas ideas en acciones.
Nos encantaría conocer tu experiencia:
💬 ¿Cuál fue el aprendizaje más valioso que te llevas de SAREAL 2026?
💬 ¿Qué proyecto o iniciativa estás más entusiasmado por implementar en tu organización?
💬 ¿Cómo imaginas que la Inteligencia Artificial apoyará tu trabajo de advocacy durante el próximo año?
💬 ¿Qué conversación, conexión o momento de SAREAL te inspiró más?
Este espacio está para que sigamos aprendiendo unos de otros, compartiendo avances y fortaleciendo nuestra comunidad.
¡Comparte tu experiencia en los comentarios! Estamos deseando conocer cómo SAREAL seguirá generando impacto en toda América Latina. 👇

[Lamin Sheik Kamara]

From the perspective of Sierra Leone, this conversation resonates strongly with our reality. Patient advocacy is growing, but we still face challenges such as limited resources, inadequate access to quality healthcare information, weak patient representation in decision-making, and the need for stronger collaboration between patient organizations, healthcare professionals, government, and development partners.

One key opportunity is to strengthen the capacity and visibility of patient organizations, so that patients are not only beneficiaries of healthcare programmes but active partners in designing policies and services. I would also like to see the next AMEA meeting place greater emphasis on practical collaboration, resource mobilization, digital advocacy, and sharing successful community-based approaches that organizations can adapt to their own countries.

The AMEA platform is an important space for ensuring that the patient voice is not only heard, but meaningfully reflected in health policies and programmes across Africa and the Middle East. 🌍🤝💙

[Beatriz Sene]

¿Cuál fue el aprendizaje más valioso que te llevas de SAREAL 2026?
La importancia de trabajar en red, compartir buenas prácticas y construir respuestas regionales para desafíos que, aunque se presentan de manera diferente en cada país, tienen muchas causas comunes.

¿Qué proyecto o iniciativa estás más entusiasmada por implementar en tu organización?
Fortalecer el uso estratégico de la Inteligencia Artificial en nuestra organización, en la elaboración de contenidos y materiales educativos, el análisis de políticas públicas, la identificación de barreras de acceso y la planificación de acciones de advocacy.

¿Cómo imaginas que la Inteligencia Artificial apoyará tu trabajo de advocacy durante el próximo año?
Será una herramienta de apoyo para monitorear políticas públicas, analizar documentos técnicos, mapear actores y oportunidades de incidencia con enfoque en lo mejor para los pacientes. También puede ayudarnos a estructurar proyectos, campañas y posicionamientos institucionales, siempre basado en fuentes confiables.

¿Qué conversación, conexión o momento de SAREAL te inspiró más?
El intercambio con organizaciones de diferentes países sobre dermatitis atópica. Escuchar sus desafíos, soluciones y experiencias mostró que no estamos trabajando de manera aislada, y cada conversación reforzó que una red regional fortalecida puede ampliar la voz de los pacientes y generar cambios más consistentes en los sistemas de salud.

[Bruna Rocha Pedroso]

¡SAREAL 2026 — Sigamos construyendo juntos! 🚀
Durante estos días en Panamá, organizaciones de toda América Latina se reunieron en SAREAL 2026 para aprender, compartir experiencias y explorar nuevas formas de fortalecer la defensa de los pacientes.
Juntos descubrimos cómo la Inteligencia Artificial puede convertirse en una aliada para la incidencia, transformamos ideas en proyectos concretos para nuestras organizaciones y fortalecimos una red de personas comprometidas con generar un cambio real.
Pero SAREAL no termina cuando regresamos a casa. Ahora comienza la parte más importante: convertir esas ideas en acciones.
Nos encantaría conocer tu experiencia:
💬 ¿Cuál fue el aprendizaje más valioso que te llevas de SAREAL 2026?
💬 ¿Qué proyecto o iniciativa estás más entusiasmado por implementar en tu organización?
💬 ¿Cómo imaginas que la Inteligencia Artificial apoyará tu trabajo de advocacy durante el próximo año?
💬 ¿Qué conversación, conexión o momento de SAREAL te inspiró más?
Este espacio está para que sigamos aprendiendo unos de otros, compartiendo avances y fortaleciendo nuestra comunidad.
¡Comparte tu experiencia en los comentarios! Estamos deseando conocer cómo SAREAL seguirá generando impacto en toda América Latina. 👇

[Gloria Huang]

Thank you, everyone, for making the Asia Pacific Alliance meeting such a collaborative and inspiring experience.

Based on our pre-meeting survey, workshop discussions, and group exercises, we reached an important consensus: our region should prioritize capacity building before launching a regional awareness campaign.

Although each country identified different priorities aligned with the WHO resolutions on lung health, skin health, and rare diseases, we also found many common needs. Strengthening patient–doctor partnerships, building advocacy skills, and promoting meaningful patient engagement were shared priorities across the region.

As a next step, let’s continue sharing best practices through the Knowledge Hub, explore joint regional projects, and co-create practical capacity-building resources that member organizations can adapt for their own countries.

What capacity-building topics would be most valuable for your organization? We’d love to hear your ideas.

[Bruna Rocha Pedroso]

🌍 EEA Meeting 2026 — Let’s keep the conversation going here!
In Sarajevo, Bosnia and Herzegovina, member organizations of the European Eastern Alliance came together to strengthen patient advocacy for respiratory, allergic, and atopic diseases in the region.
The workshop focused on essential capacity building — equipping leaders with skills in media relations, crisis communication, and aligned policy advocacy strategies, drawing on real-world examples of patient-led advocacy driving change across the region.
This meeting is just the beginning. We want to hear from you: how does this conversation resonate with your organization’s reality?
💬 Tell the community: what challenges and opportunities do you see in respiratory and atopic disease advocacy in your country?
💬 What would you like to see at the next European Eastern Alliance meeting?
Join the conversation below — your experience could inspire another organization facing the same challenge. 👇

[Bruna Rocha Pedroso]

🌍 NAA Meeting 2026 — Let’s keep the conversation going here!
This year, in Denver, the North American Alliance held its first-ever summit, bringing together local patient advocates to tackle the health inequities affecting millions of people living with allergic, lung, and skin-related conditions in the region.
This meeting is just the beginning. We want to hear from you: how does this conversation resonate with your organization’s reality?
💬 Tell the community: what challenges and opportunities do you see in health equity advocacy in your country?
Join the conversation below — your experience could inspire another organization facing the same challenge. 👇

[Bruna Rocha Pedroso]

🌍 APAC Meeting 2026 — Let’s keep the conversation going here!

On 14–15 May, in Kuala Lumpur, member organizations of the Asia Pacific Alliance came together under the banner “Together for Health. Stand with Science.” to strengthen patient advocacy for respiratory, allergic, and atopic diseases in the region.
Patient advocates from eight countries worked together to strengthen the region’s role in HTA and Clinical Guidelines, and designed new localized calls to action using GAAPP’s organizational toolkits.
This meeting is just the beginning. We want to hear from you: how does this conversation resonate with your organization’s reality?
💬 Tell the community: what challenges and opportunities do you see in respiratory, allergic, and atopic disease advocacy in your country?
💬 What would you like to see at the next Asia Pacific Alliance meeting?
Join the conversation below — your experience could inspire another organization facing the same challenge. 👇

[Prince Osei]

It was such a wonderful session with the President ,I for one has been encouraged to not relent in our individual organizational campaigns and eventually one moment,one time ,it shall yield expected patient Advocacy outcomes.

[Bruna Rocha Pedroso]

GAAPP Webinar | Continue the Conversation: Perfecting Your Pitch

Thank you for joining us for today’s webinar on Perfecting Your Pitch!
💬 We invite you to share:

What is one key takeaway you’re leaving with?
How can you apply this to your organization’s work?
What do you find most challenging when building or delivering your pitch?
Do you have a pitch, campaign, or initiative you’d like to share or get feedback on?

We look forward to learning from you!!!

[Stephanie Williams]

I loved hearing Migdalia, Vildana, Kristen, and Riley give their pitches! They all did a great job, but what struck me was how different they all were! They all followed the formula Tonya gave, but each one had it’s own “flavor”.

[Stephanie Williams]

Are you registered for tomorrow’s GAAPP Academy?
Tonya will be presenting some very helpful information about how to create your organization’s pitch! You don’t want to miss it!
If you’ve not done so already, you can register here: https://us06web.zoom.us/webinar/register/WN_VuUvI4UaTaC8s2ldpIxohg
Hope to see you there!

[Bruna Rocha Pedroso]

Introduce Your Organization to the GAAPP Community
We’d love to get to know you 💙
Take a moment to introduce your organization and share a bit about your work, what you’re currently focusing on, and anything you’d like others in the community to know.
If you feel comfortable, you can also share a challenge you’re facing or ways you’d like to connect with others.
Looking forward to learning from each other and growing this community together!!!

[Lamin Sheik Kamara]

Hello GAAPP Community 💙,

We are excited to introduce The Asthma Foundation in Sierra Leone, a community-driven organization dedicated to improving the lives of people living with asthma across the country. Our work focuses on raising awareness, promoting early diagnosis, and improving access to affordable and quality asthma care, especially in underserved communities.

Currently, we are implementing the Breathe Well Initiative, which aims to empower individuals through education, community outreach, and advocacy for better asthma policies and treatment access. We are particularly passionate about addressing gaps in awareness, reducing stigma, and ensuring that no one is left behind when it comes to respiratory health.

One of the key challenges we face is limited access to essential asthma medications, such as inhalers, as well as low levels of public awareness about asthma management. We are eager to learn from other organizations, share experiences, and explore opportunities for collaboration, especially around advocacy, capacity building, and innovative approaches to care.

We look forward to connecting, learning, and growing together as a community committed to improving respiratory health worldwide.

Thank you 💙

[Prince Osei]

Hi Lamin, Good to hear that, How I wish am able to join you and your organization in Sierra Leone ,to give you support in your Breathe Well Initiative.

Here in Ghana , Asthma Ghana yesterday on World Asthma Day did launch Our Asthma Clubs with about 600 Senior High School Students at Presec Senior High School.
In attendance were five Senior High Schools and the Deputy Director of Ghana Education Service as well Executives from Cipla and the Pharmaceutical Society of Ghana ( PSGH)..

We were able to furnish all the Schools with An Asthma School kit and intend to visit the Asthma Clubs within all Senior High Schools across Ghana to intensify Asthma Education and Awareness.
During this Outreach, All Asthmatics who were encountered as Students have been adopted into our Asthma management and Patient Support Systems to ensure that no Senior High School Student misses classes due to Asthma.

We had the chance to get busted a lot of myths about Asthma and Prof Wutor Victor gave such an educative and informative insights about Asthma that the Young ones were able to relate with.

Lamin , perhaps we could team up to have similar outreachs in Sierra Leone.

Prince Osei
Asthma Ghana – Administrator.
Email: nanaprin30@gmail.com.
Phone : +233 536106058

[Lamin Sheik Kamara]

Prince, thank you so much for sharing this inspiring update. Congratulations to Asthma Ghana on the successful launch of the Asthma Clubs during World Asthma Day. Reaching over 600 students and engaging key stakeholders like the Ghana Education Service, Cipla, and the Pharmaceutical Society of Ghana is truly impactful.

I am especially inspired by your focus on asthma education, myth-busting, and ensuring that students living with asthma receive proper support so they do not miss school because of their condition. This is exactly the kind of community-centered approach we hope to strengthen through the Breathe Well Initiative here in Sierra Leone.

I truly appreciate your willingness to support and collaborate with us. I believe there is great potential for partnership between Asthma Ghana and the Asthma Foundation in Sierra Leone. Organizing similar school outreaches, awareness campaigns, and asthma clubs in Sierra Leone would make a meaningful difference for many young people.

Let us definitely continue this conversation and explore how we can work together to expand asthma education and patient support across our countries. Thank you once again for your encouragement and leadership in this important work 💙

[Prince Osei]

Sure ,Lamin we will ,no Child in School has to miss classes because of Asthma, if they do ,then they will miss work schedules too in the future, Affecting Productivity and a chance to live without limitations from Asthma.
Sure ,we will.

[Bruna Rocha Pedroso]

What a great What a wonderful exchange of experiences!!!!
Thank you Lamin and Prince!
We need more projects like yours and more conversations like these to help one another. Often, a solution that someone else has already found helps us in our daily lives.

[Prince Osei]

You are Welcome.!!!

[Rebeca Andradas Rivas]

¡Hola comunidad GAAPP! 💙
Gracias por recibirnos en esta maravillosa comunidad.
Territorio Salud, es una joven asociación sin ánimo de lucro en España que impulsa proyectos para mejorar la salud y el bienestar, especialmente en cronicidad, conectando a pacientes, familias, profesionales e instituciones. Ahora mismo estamos centradas en dos proyectos:

1.- Salud Entrelíneas, una iniciativa de lectura y salud que aborda temas transversales que afectan a todas los pacientes y a sus cuidadoras y cuidadores. En cada evento tratamos un tema concreto de manera presencial y online, guiado por un/a profesional y amadrinado por una asociación de pacientes, para sumar evidencia, experiencias y apoyo comunitario.

2.-Además, junto a la Universidad Complutense de Madrid, lanzamos el Experto en Atención a la Cronicidad y Coordinador de Bienestar y Protección Integral en el Ámbito Infanto-Juvenil , abordando, entre otras, patologías frecuentes en el entorno escolar como asma, alergias, dermatitis atópica y EoE. En esta ocasión, además de la formación técnica de las enfermedades, se da voz a las asociaciones de pacientes de cada patología para que cuenten el día a día de los pacientes y las dificultades que afrontan en el entorno escolar.

Nos encantará conectar con organizaciones que trabajen patient advocacy, salud escolar y bienestar infanto-juvenil para compartir aprendizajes y colaborar. 🤝💙

Muchas gracias.
Un abrazo,
Territorio Salud

[Stephanie Williams]

Thank you for sharing about your initiatives! I would love to hear more about Salud Entrelíneas sometime!

Stephanie
Sr. Director of Education, GAAPP

[Stephanie Williams]

We had some technical difficulties with our COPD Success Meeting earlier today, so I have decided to host the meeting again on Monday. If you came to today’s meeting, you don’t need to come on Monday 🙂

Here is the link to register: https://us06web.zoom.us/meeting/register/JF2IUxGPQXiFPX77vLSeCw

[Stephanie Williams]

Hello!
If you support people living with COPD, I invite you to join us tomorrow for our COPD Success Meeting which will be held at 14h CET. Here is the link to join us: https://us06web.zoom.us/j/85753802580?pwd=vmahAVszbDLyo71FdeXLn7J7mvwyfT.1

Hope to see many of you there!
~Stephanie

[Stephanie Williams]

We are pleased to share a new patient-focused infographic on uncontrolled moderate to severe asthma that highlights the real experiences of people living with ongoing symptoms, delays in diagnosis, and challenges accessing effective treatments.

This visual resource is designed to be easy to understand and simple to share. It can be used in your social media, in newsletters, support groups, community education activities, and advocacy outreach.

👉 Download the infographic here: https://gaapp.org/wp-content/uploads/2025/09/Uncontrolled-Asthma-Infographic.pdf

We encourage you to share this resource with your communities and partners. If you are in touch with other GAAPP member organizations, please remind them to visit this forum so they can access resources like this and learn more about our collective work.

If you think this tool is useful, write a comment about how you will use it to inform others – we can’t wait to hear from you!

[Vildana Mujkic]

Dear Stephanie, thank you for sharing. This is great resource. I wonder if it is possible to translate it on our local languages?

[Prince Osei]

You are Welcome Madam Stephanie.
I find the steps outlined in the solutions for better care very precise with clear direction to better lung health Care.
Most often patients do not return to medical facilities for reviews and guidance in respect to what is required for having a controlled Asthma after emergency trips to the ER.
Already shared in my Asthma Ghana Community and would be posted on our Facebook wall as well.
Thank you.

[Prince Osei]

Link received,am so much grateful.
It a very resourceful editorial piece for Outreach and Awareness.

[Stephanie Williams]

Hello!
I’m thrilled that you find the infographic useful. We would love for you to share it with those in your community, either in your social media or newsletters.
Are you, by chance, active in the WhatsApp group for your region?
If so, would you mind mentioning this resource in that group and encouraging people to come to the Knowledge Hub to locate it and other tools?
We appreciate your being an active part of this forum!!
~Stephanie

[Prince Osei]

If anyone could also assist with directions to the infographic file ,I would also appreciate.

[Stephanie Williams]

We are having some difficulty. Here is the direct link to it: https://gaapp.org/wp-content/uploads/2025/09/Uncontrolled-Asthma-Infographic.pdf

Sorry, the file isn’t showing in the directory. We are working to fix it!

[Prince Osei]

@ Lamin
Hi ,La
min , kindly send a pdf copy of the update to nanaprin30@gmail.com for me ,am unable to trace a copy in the knowledge hub.
Thank you.

[Prince Osei]

Nice and great from my end.

[Kristen Willard]

Hello everyone and happy Wednesday! How is the week going for you all?

[Prince Osei]

Hi , Knowledge Hub Family

In the midst of Unfavorably environmental risk factors, Asthmatics and COPD patients within the Sub-saharan Africa have not been able to achieve the desired quality of life due to poor access to lung health care within the Primary Healthcare systems, expensive medications, aerochambers, and oxygen delivery devices , in spite of all the global action to make life much better for our dear ones with chronic respiratory diseases.

I am extremely glad to be present in this August house , joining hands and voices in consolidated efforts to deepen Advocacy, Education for capacity building, Research and Clinical trials for innovative pharmaceutical interventions in the clinical, socioeconomic, pharmacological management of respiratory diseases.
Together, as we all Speak Up in unison , our voices would be louder than Stigmatisation against COPD patients and affordable lung health care for Asthmatics.

Prince Osei, Asthma Ghana.

[Ruth Tal-Singer]

Happy New Year, I hope that the research project in Ghana will bring some important insights that can help your advocacy efforts!

[Prince Osei]

An extremely shared Aspiration.
Happy New Year 🥳🥳🥳.

[Lamin Sheik Kamara]

Thank you, Prince, for this powerful and timely contribution. You have rightly highlighted the persistent challenges faced by people living with asthma and COPD across Sub-Saharan Africa—particularly the gaps in primary healthcare systems, the high cost of essential medications and devices, and the ongoing environmental risks that continue to undermine quality of life.

Your call for strengthened advocacy, capacity building through education, and increased investment in research and clinical trials resonates strongly. Community-driven initiatives, policy engagement, and locally relevant evidence are critical if we are to move from global commitments to real, on-the-ground impact for patients and families.

As we continue to speak up together, collective action and shared learning across countries will be key to breaking stigma, improving access to affordable lung health care, and ensuring that no one living with chronic respiratory disease is left behind.

[Prince Osei]

You are Welcome, Lamin,
Exactly, Global efforts ought to translate into interventions with measurable impacts .
Elevated accessibility to lung health care with fully enjoyed rights to Cleaner Air Environment in Africa.

[Lamin Sheik Kamara]

Thank you very much. I completely agree, global efforts must translate into locally driven interventions with clear, measurable impact. Improving access to lung health care, while safeguarding the right to clean air, is essential if we are to meaningfully improve outcomes for people living with asthma and other respiratory conditions across Africa. Through collective action, evidence-based advocacy, and community-centered solutions, we can move from commitments to real change on the ground.

[Lamin Sheik Kamara]

Happy New Year and welcome everyone to another exciting episode of the GAAPP Knowledge Hub! It’s great to be back and to reconnect as we step into a new year filled with fresh ideas, renewed energy, and opportunities to grow together.

I’m really looking forward to hearing from everyone, sharing experiences, and contributing meaningfully to the Hub and to the impactful work happening across our various organizations. Let’s continue learning from one another, supporting each other, and building strong collaborations that make a real difference for our communities.

Here’s to a year of active participation, great conversations, and collective impact. I’m excited to be on this journey with you all!

[Kristen Willard]

Happy new year, Lamin! Wishing everyone a happy start to 2026. I look forward to working with and learning from you all over the next year.

[Lamin Sheik Kamara]

Happy New Year! Thank you so much for the warm wishes. I’m also looking forward to working with and learning from everyone as we begin 2026 together. Wishing us all a productive and successful year ahead.

[Lamin Sheik Kamara]

This is truly encouraging news. The availability of omalizumab for all patients in Italy reflects the powerful impact of sustained advocacy and strong collaboration between patient organizations and clinicians. With new therapies on the horizon across Europe, it’s inspiring to see how collective efforts are expanding access to the right treatments and helping people live healthier, more dignified lives. This is a strong affirmation of the fundamental right to care and cure when patients and healthcare professionals work together.

[Elena Radaelli]

I think that the best way to be cured is to trust your clinician, share with him/her all your doubts, observations and even proposal or at least ideas you could have. But I also very conscious of the fact that also a very aware knowledgeable patient makes the difference in a better cure. Do not trust the web or AI, do read what they propose you but then evaluate them and share the info you have found by looking for scholar, academic trustworthy sources, GAAPP’s sources and share all this with your clinician!

[Lamin Sheik Kamara]

Absolutely! You’ve highlighted a very important point about the partnership between patients and clinicians. Trust is crucial, but active participation makes all the difference. Being open with your clinician about your doubts, observations, and even ideas can help them tailor treatment to your specific needs.

At the same time, being an informed patient adds another layer of safety and effectiveness. It’s smart to research reputable sources like peer-reviewed journals, academic institutions, or trusted organizations like GAAPP rather than relying solely on the web or AI. Then, discussing your findings with your clinician allows for a collaborative approach, ensuring decisions are evidence-based and personalized.

In short: trust your clinician, stay curious, and communicate openly this combination often leads to the best outcomes.

[Elena Radaelli]

2026 will be a really exciting year as omalizumab pt has been provided to all Italians thanks to the intense work of the patients’ Association and also new drugs are on their way in Europe and this means to embrace wider opportunities to get the right cure and live a dignities life! When patient and clinicians work together they really affirm the fundamental importance of the right to cures!

[Kristen Willard]

I could not be happier to read this update, Elena! A new option for a community in great need of them. Congratulations to all who worked tirelessly to make this happen! We look forward to seeing how this improves the lives of those in Italy.

[Lamin Sheik Kamara]

Dear Knowledge Hub family,

Wishing you all a Merry Christmas and a prosperous New Year. May this festive season bring you rest, joy, and renewed strength. I look forward to resuming together and receiving everyone warmly as we begin the new year with fresh energy and purpose.

Warm regards,
Lamin

[Alexandru Corlateanu]

[Tina Mesarič]

Holiday & Winter Tips for People with Atopic Dermatitis 🎄❄️

(Prepared for members of the Atopika Institute – and open to community input)

For our members at the Atopika Institute, I’ve put together a few practical winter and holiday tips to help manage atopic dermatitis during the colder months. Winter can be especially demanding for the skin, but with mindful daily care, flare-ups can often be reduced or even prevented.

Our winter tips for people living with atopic dermatitis:

Choose natural fabrics and dress in layers:
Lightweight, breathable fabrics allow the skin to breathe and help reduce irritation caused by sweat. Dressing in layers helps you adapt to changing indoor and outdoor temperatures.

Avoid sudden temperature changes:
Rapid shifts from cold to warm environments can worsen dryness and itching.
Protect exposed areas (e.g. wear gloves), avoid hot water when cold, and limit hot showers—even if they temporarily relieve itching.

Nourish the skin consistently:
Daily skincare is essential. In winter, the skin often needs richer emollients. Listen to your skin and adjust your routine, but avoid very greasy products on open or weeping areas.

Keep nights cool:
Overheated bedrooms can increase itching. Aim for a sleeping temperature below 19°C and use breathable, well-aired bedding.

Consider humidifying indoor air:
Dry air can worsen skin symptoms. A humidifier may help, but those allergic to dust mites should keep humidity levels moderate.

Ask your dermatologist about phototherapy:
UV light has immunosuppressive effects and benefits many people with AD. During winter, phototherapy may be a helpful option.

Support your body from within:
Choose unprocessed foods, reduce sugar, and avoid known food triggers.
Pay attention to vitamin D intake through diet or supplements, especially during months with limited sunlight.

Do you have any additional winter or holiday tips that help you manage atopic dermatitis? Small personal strategies can make a big difference—feel free to share your experience with the community.

[Lamin Sheik Kamara]

Thank you for sharing these thoughtful and practical tips, this is a really helpful guide for the winter season. Managing atopic dermatitis can be challenging, especially during colder months, and reminders like these make a real difference. I appreciate the focus on both daily care and overall wellbeing, and I’m sure many in the community will benefit from this.

[Ruth Tal-Singer]

Thank you for sharing these good tips!

happy Holidays, Ruth

[Lamin Sheik Kamara]

Your Asthma Inhaler Kit: Essentials to Have 📝

Hey, having the right inhaler kit can make a big difference in managing your asthma 🤝. Here’s what to include:

Inhaler Kit Essentials 💊
– Prescribed inhaler(s): Make sure you have the right medication and dosage
– Spacers or holding chambers: Helps medication reach your lungs more effectively
– Peak flow meter: Monitors your lung function
– Asthma action plan: A written plan with your doctor’s instructions

Additional Items to Consider 📝
– Extra inhalers: Keep spares at home, work, or school
– Batteries: For your peak flow meter or other devices
– Inhaler covers: Protects your inhaler from dust and damage
– Emergency contact info: Keep a list of contacts and your doctor’s info

Tips for Using Your Inhaler Kit 📝
– Check expiration dates: Regularly check and replace expired medications
– Keep it accessible: Store your kit in an easily accessible place
– Use it as directed: Follow your doctor’s instructions for using your inhaler and peak flow meter

Traveling with Your Inhaler Kit ✈️
– Carry it with you: Keep your kit with you, especially when traveling
– Notify your airline: Inform your airline about your asthma and medication needs
– Keep it in a protective case: Protect your kit from damage during travel

[Tina Mesarič]

This is such a helpful reminder for the holiday season, One thing I’d also add is paying attention to indoor air quality — airing out rooms regularly (even briefly) can really help, especially when homes are heated and more crowded. Using a humidifier (if recommended by your doctor) can also make breathing more comfortable. Thanks for sharing these great tips — they’re a good reminder that with small adjustments, Christmas can still be fully enjoyed, even with asthma.

[Lamin Sheik Kamara]

Absolutely agree with you! 😊 Indoor air quality is such an easy thing to overlook during the holidays, but it makes a big difference. Simple steps like airing out rooms or using a humidifier can really help everyone breathe easier. Thanks for adding that, it’s a great reminder that with a few small adjustments, the holidays can still be comfortable and enjoyable for people living with asthma.

[Lamin Sheik Kamara]

Asthma and Christmas: Tips for a Fun and Safe Holiday 🎄🤝

The holiday season can be a challenging time for people with asthma, but with some planning and precautions, you can enjoy the festivities 🎅. Here are some tips to help you manage your asthma during Christmas.

Common Asthma Triggers During Christmas 🤕
– Cold air: Cold weather can trigger asthma symptoms, so wrap up warm when heading outdoors ❄️
– Dust and decorations: Dust and particles from decorations, Christmas trees, and gifts can exacerbate asthma
– Smoke and scents: Avoid exposure to strong scents, smoke, and fragrances that can trigger asthma symptoms 🚭
– Stress and overexertion: Manage stress and pace yourself to avoid overexertion

Tips for a Safe and Fun Christmas 🎄
– Decorate with care: Use dust-free decorations, and avoid dusty areas
– Keep your home clean: Regularly vacuum and dust surfaces to reduce allergens
– Avoid strong scents: Opt for fragrance-free products and avoid strong-smelling foods
– Stay hydrated: Drink plenty of water to keep your airways moist
– Take breaks: Pace yourself and take breaks to rest and relax
– Keep your inhaler handy: Make sure you have your medication with you at all times

Traveling with Asthma ✈️
– Plan ahead: Check the air quality and weather forecast at your destination
– Pack your medication: Bring your medication and a copy of your asthma action plan
– Notify your airline: Inform your airline about your asthma and any special needs

Enjoy the Festivities 🎅
– Focus on fun: Prioritize activities that bring you joy and don’t exacerbate your asthma
– Stay active: Engage in physical activities that work for you, like walking or yoga
– Manage stress: Take time to relax and unwind during the holiday season

[Snežana Šundić Vardić]

At Alergija i ja, we try to remind ourselves and our community — that it’s okay to slow down, set boundaries, and choose rest when possible. “Keep Calm – and check the ingredients” – Have a great holiday!

[Snežana Šundić Vardić]

I completely relate. As the year comes to an end, everything seems to speed up just when our bodies and minds need a pause. You’re definitely not alone in feeling this.

[Lamin Sheik Kamara]

Absolutely, thank you for saying that. It really does feel like everything accelerates right when we’re craving a moment to breathe. It’s comforting to know we’re not alone in that feeling, and hopefully we can all find small pockets of rest and reflection as the year wraps up.

[Lamin Sheik Kamara]

As December 2025 comes to a close, we pause to reflect on a year defined by shared learning, collaboration, and the collective power of patient voices across the globe. The GAAPP Knowledge Hub has continued to serve as a space where knowledge meets purpose connecting advocates, experts, and communities committed to improving respiratory and allergy care.

This year, we have seen ideas transformed into action, data turned into impact, and experiences shared to strengthen advocacy and patient-centred solutions. Every resource explored, every discussion sparked, and every collaboration formed has contributed to building a more informed and empowered global community.

As we look ahead to a new year, let us carry forward the spirit of curiosity, solidarity, and innovation. The challenges before us remain, but so does our shared commitment to equity, access, and better health outcomes for all. Together, we will continue to learn, grow, and amplify the voices that matter most.

Thank you for being part of this journey. Here’s to a new year filled with knowledge, impact, and continued progress powered by community and driven by purpose.

[Stephanie Williams]

Hi Kristen,
I am looking forward to the end of the year, too! This has been a very busy year for so many of us, and we need a little time to step away and recharge so we can come back in the new year with a clear focus and vision. I hope everyone has a Happy Holiday season and a bright New Year!!

[Kristen Willard]

How is everyone doing as the end of the year and holidays approach? I find this can be a very busy time when I’d like things to slow down! Anyone else?

[Ruth Tal-Singer]

It is quite busy as we wrap up year end projects (lots going on if you read December’s newsletter) and setting up so the Research team starts 2026 with projects planned and ready for implementation.

[Kristen Willard]

Our Patients as Research Partners webinar recording is now live! This is a great resource for both people impacted by chronic illness and GAAPP member organizations to learn more about the central role patients can and should play in research. We hope this is helpful: https://www.youtube.com/watch?v=2gaKaKaVRT8&t=6s

[Vildana Mujkic]

It is very helpful. Thank you for sharing.

[Vildana Mujkic]

Hi everyone,
I found this resource and found it interesting to share since writing a strong grant proposal is essential for securing funding that supports patient-organisations’ work — whether for advocacy, research, education, or community outreach. A well-prepared grant proposal clearly defines the need, outlines a realistic plan and budget, and demonstrates your organisation’s capacity and impact. The guide below helps organisations structure and polish their grant applications step by step. https://gate.ngo/wp-content/uploads/2024/04/Proposal-Writing-Toolkit.pdf

[Kristen Willard]

Hi everyone! Did you miss our recent webinar, “From Insight to Impact: Using GAAPP’s Knowledge Hub”? We hope you will take a look and learn more about all the Hub has to offer you as a GAAPP member organization.

Watch the recorded webinar here: youtube.com/watch?v=EqsUkNfhWg4&feature=youtu.be

[Kristen Willard]

Hi everyone! I’d like to highlight a new resource hosted by GAAPP: https://copdflareups.gaapp.org/ the COPD Exacerbations Hub! This is intended for patients and families to learn the basics about exacerbations, what to do when you see signs of a flare-up, and more about using COPD action plans. Translations are currently being done and will be posted soon! If you use this resource, let us know what you think!

[Lamin Sheik Kamara]

I’d love for us in the GAAPP Knowledge Hub to collaborate on creating a **Regional Awareness Toolkit** that highlights effective ways to educate communities about asthma, allergies, and related conditions. Together, we can share local strategies, success stories, and materials that others can adapt in their countries. This will strengthen our collective advocacy and make our patient voices louder across regions. 🌍💙

[Kristen Willard]

This is a wonderful idea. In this first version of the Knowledge Hub, we can keep the conversation under one thread (the one you started!) Everyone can outline best practices and have conversations here and link to resources in the library and elsewhere online.

(A side note to all), remember to submit your resources for addition to the Knowledge Hub libraries. We are excited to feature your materials!

Let’s start sharing local strategies and successes on this thread – we can formalize them when we have more content. What do you think?

[Kristen Willard]

I hope you’ll join us for a November 2025 webinar: Patients as Research Partners! More information follows:

Join GAAPP for a one-hour webinar designed to help people living with chronic conditions feel confident and informed about getting involved in health research. Nov 25, 2025 09:00 AM Eastern Time/15H CET

At this event, you’ll learn how your experiences and opinions can make a real difference in shaping studies, improving care, and driving innovation. We’ll explore different ways patients can take part in research—like clinical trials, surveys, or focus groups—and what each involves.

You’ll also hear from a patient advocate, researcher, and health care professional, will share their insights on working together to make research more meaningful and patient-centered. Topics will include understanding research basics, talking with your doctor about research, and what to know about consent and data privacy.

The session will include a live Q&A so you can ask questions and join the conversation. REGISTER HERE.

[Vildana Mujkic]

Thank you for the invitation! This sounds like a great initiative. I will be happy to join the webinar and learn more about how patients can be meaningfully involved in research.

[Stephanie Williams]

I have a great tool to share for people who are advocates in COPD. It’s a video showcasing how to use the COPD Patient Care Map. Here is the link: https://youtu.be/AdnF0fvBVwU?si=Y1sZl4aAfoMM_2Wz
If you are new to advocacy or if you are an experienced advocate – there is something in this tool for everyone!

[Kristen Willard]

I know many people follow GAAPP’s social media, such as Facebook and LinkedIn. We also have a very active YouTube page – I hope people will subscribe if they do not already! https://www.youtube.com/@gaapporg/videos

Two amazing recent videos:
Migdalia Denis hosts an excellent webinar on social determinants of health (in Spanish with English subtitles): https://www.youtube.com/watch?v=lUX7qZyCODc
Dossavi Somabey and Fanny Sentenac talk about critical inhaler access issues in Togo: (in French with English subtitles): https://www.youtube.com/watch?v=B35MgRJ6QlE

Do you have a favorite video from GAAPP, your organization, or another patient advocacy group that you’d like us to watch? Share the link in a comment!

[Lamin Sheik Kamara]

One success I’m really proud of is how the Asthma Foundation Sierra Leone has deepened its community engagement through our Breathe Well Initiative. Over the past few months, we’ve reached hundreds of people with awareness sessions on asthma management, early diagnosis, and the importance of clean air. What’s going well is seeing more patients and families openly discuss respiratory health, breaking the silence and stigma around chronic illness. It’s proof that consistent advocacy and education truly save lives.

[Vildana Mujkic]

That’s truly inspiring! Congratulations to the Asthma Foundation Sierra Leone for the incredible work through the Breathe Well Initiative.

[Kristen Willard]

This is most definitely something to be proud of! The hard work and dedication paying off for hundreds in your community. Thank you for sharing with us.

[Jake Shumaker]

I completely agree with Kristen!

[Lamin Sheik Kamara]

Between meetings, I’ve kept board members engaged by maintaining consistent communication through progress updates, short briefing notes, and WhatsApp discussions on upcoming programs like the Breathe Well Initiative. I also involve them in advocacy campaigns and community outreach planning, ensuring they contribute their expertise to real-time decisions. This approach helps them stay informed, valued, and connected to the Foundation’s ongoing impact

[Karen Rance]

What’s the most impactful way you’ve kept your board members actively involved between meetings?

[Vildana Mujkic]

As patient advocates, we strive to strengthen our organizations and better serve our communities, so I was wondering what are the top areas where your organization requires support to enhance its daily operations and overall impact?

[Kristen Willard]

Upscaling operations is a very helpful topic for me.

[Kristen Willard]

Let’s open the conversation to talk about what’s going well. Share a success you or your org would like to tell us about! Time to brag!

[Vildana Mujkic]

Great idea, Kristen. I just want to say that I am really proud of the work of the AAA Association BiH. The level of our achievements and advocacy, including adding epinephrine and JAK inhibitors to national lists, simply cannot be compared to the minimal resources we have. It shows how much impact can be made even with very limited support from our country.

[Stephanie Williams]

The Speak Up for COPD Coalition recently released the data from a policymaker survey we did in 14 countries around the world. We were very excited to see that COPD is better recognized and is understood to have a serious impact on individuals and health care systems. We appreciate the modest gains, and that gives us a little oomph to keep pushing ahead!

[Vildana Mujkic]

This is fantastic news. Thank you for sharing! It’s very encouraging to see increased recognition of COPD among policymakers across 14 countries, and a greater understanding of its real burden on individuals and health systems. While these gains may seem modest, they matter a lot and they build momentum, credibility, and leverage. I truly hope we can raise COPD to the same level as asthma when it comes to both treatment and research. Let’s use this data to push for stronger policy commitments, better funding, earlier intervention, and more innovation.

[Victor Gascon Moreno]

GAAPP successfully brought together the EoE and Alpha-1 (Lung and Liver) communities this year to ensure we do global actions that trickle down to local action. In another hand another organization where I proudly serve in the strategic committee was just created and laucnhed an international manifesto for a better care model of asma and allergies… All of this in less than 6 months!

[Vildana Mujkic]

The only thing I hear from this is that patient advocates can truly move mountains. Keep up the great work, Victor!

[Kristen Willard]

I love this one, Victor! What a win for these communities. Can’t wait to see what comes next.

[Stephanie Williams]

I just made an entry on the “donate your time” section of this site to help patient advocates learn how to be effective storytellers when it comes to sharing their journey with decisionmakers. I hope others will check out that part of the Knowledge Hub, too! We can help each other in this important work!

[Vildana Mujkic]

Thank you Stephanie! This is very important to know when doing advocacy work.

[Stephanie Williams]

Hi!
I wanted to make sure everyone saw this opportunity for a communications grant!

GAAPP World #ChronicCoughDay 2025
Communication Grant

Participate in the Communication Grant related to Chronic Cough

A 200€ grant is offered to help us post 3 social media post. The toolkit with all the explanations step by step is available in several languages.

Timing: You can post the social media content from today until November 3rd.

Additional languages: If you need these assets in another language, please feel free to contact socialmedia@gaapp.org and we will be happy to arrange that for you.

Apply for the grant here: https://forms.monday.com/forms/16698e5c92d78a55001771a8503366e5?r=use1

Thanks in advance for helping us get the word out about Chronic Cough!

[Kristen Willard]

I’m so excited for WCCD 2025! Thanks Stephanie. You can also register for the WCCD 2025 webinar here: https://us06web.zoom.us/webinar/register/WN_HjgeYlipT5CO0H8jifeslQ#/

[Vildana Mujkic]

Happy World Chronic Cough Day! Let’s raise awareness and support everyone living with chronic cough.

[Lamin Sheik Kamara]

World Urticaria Day (October 1st)

“On World Urticaria Day, we stand with those living with chronic hives and allergic skin conditions. Let’s raise awareness, promote understanding, and support better access to care and treatment. No one should have to suffer in silence from urticaria.”

World Oxygen Day (October 7th)

”World Oxygen Day, a reminder that clean air and access to medical oxygen are vital for life. Let’s work together to protect our air, support lung health, and ensure that everyone who needs oxygen can access it safely and affordably.”

[Kristen Willard]

Thank you for commemorating World Urticaria Day! As a person with chronic hives (thankfully in remission), I appreciate the community raising awareness of this condition. Lamin Sheik Kamara, thank you for all your Knowledge Hub Forum posts – we are glad you’re here!

[Lamin Sheik Kamara]

Be aware: some people have latex allergies, look for ‘latex-free’ alternatives and seek medical advice if you experience itching, hives, or breathing problems.

[Lamin Sheik Kamara]

Thanks so much! At the Asthma Foundation in Sierra Leone, we’re driving the Breathe Well Initiative to improve access to treatment, raise awareness, and train healthcare workers on chronic lung health.

Your community can help by sharing our messages, supporting outreach programs, and partnering with us to reach more people across the country. Together, we can make breathing easier for everyone!

[Sthefanie Petti]

Hi, everyone! Last week, we observed World Urticaria Day and World Oxygen Day!

You can still echo patient voices by sharing the content available on our Communication Grant toolkit. Apply here: https://gaapp.org/wud2025.

You can also share O2 Day patient testimonials from our social media! This year, we had Lynn, Russell, and Karen sharing what it’s really like to fly with portable oxygen concentrators (POC). Let’s push for one clear, consistent set of global rules for #FlyingWithO2.

Please feel free to reach out if you have any questions!

[Karen Rance]

Thank you for helping raise awareness about latex allergy—a condition that’s often overlooked but can have serious implications for patients and healthcare workers alike. GAAPP continues to do incredible work in empowering those affected through education and advocacy.

[Kristen Willard]

Did you know it’s World Latex Allergy Awareness Week? ~6 percent of the population may be impacted by a latex allergy. Learn more on our website here: https://gaapp.org/latex-allergy-awareness-week-2025

[Stephanie Williams]

I’m so glad you brought this up. When we were setting things up for the GAAPP Summit, we needed some adhesive to post things up on the walls. We had to make sure that the product we purchased didn’t have any latex in it. That is not as easy as you think it should be.

I would guess that most people think of latex allergies when it comes to healthcare settings – with latex gloves and that kind of thing, but the exposure can happen anywhere.

What are some signs and symptoms of a latex allergy?

[Vildana Mujkic]

Hi Stephanie,
Some common signs and symptoms of a latex allergy include:
Skin reactions: itching, redness, rash, hives (raised bumps) in the area that touched latex
Swelling (especially around hands, lips, or other contact areas)
Respiratory symptoms: sneezing, runny or stuffy nose, itchy or watery eyes, scratchy throat
Asthma-like symptoms: wheezing, shortness of breath, chest tightness, cough

[Vildana Mujkic]

Hi Stephanie,
Some common signs and symptoms of a latex allergy include:
Skin reactions: itching, redness, rash, hives (raised bumps) in the area that touched latex
Swelling (especially around hands, lips, or other contact areas)
Respiratory symptoms: sneezing, runny or stuffy nose, itchy or watery eyes, scratchy throat
Asthma-like symptoms: wheezing, shortness of breath, chest tightness, cough

[Lamin Sheik Kamara]

We are grateful for doing our best.

[Karen Rance]

Hi Everyone! What strategies and practices can organizations use to keep volunteers motivated, engaged, and inspired over time? I’d love to hear your comments.

[Vildana Mujkic]

I like when feeling as a part of a community. Working with people who share my values, being able to connect with other volunteers or staff — this creates belonging. If the environment is friendly, supportive, inclusive, I look forward to coming back. Also, knowing there’s someone I can ask for help or chat with when things are tough helps.

[Stephanie Williams]

I will stay engaged as a volunteer when I feel like the organization has a plan or strategy that I can plug into. If they have a few choices of ways I can be involved, then I can find something to fit my time/energy level. If I have to figure out ways to support the work, I have a harder time staying involved.

[Kristen Willard]

I always feel good when an organization pays attention to me as a volunteer – keeps in contact with me with meetings, messages, and success stories. I love learning from other volunteers what is working for them that can inform my approach. Great question, Karen!

[Lamin Sheik Kamara]

Understanding Immunology and Respiratory Diseases in Sierra Leone.

Respiratory diseases such as asthma, COPD, pneumonia, and tuberculosis remain serious health concerns in Sierra Leone. Many people are living with these conditions, but due to limited awareness, late diagnosis, and challenges in accessing affordable treatment, the burden is growing quietly within our communities.

Immunology — the study of how our body defends itself — helps explain why some people are more vulnerable to infections, allergies, or chronic breathing problems. In Sierra Leone, where air pollution, dust exposure, smoking, and the rise of harmful substances like “Kush” are common, understanding the immune system is key to both prevention and treatment.

🔹 The Reality Today

Many patients still struggle to get regular access to essential medicines like inhalers.

Specialist doctors in respiratory health are few, making early intervention difficult.

Community awareness is low — meaning symptoms are often ignored until conditions become severe.

🔹 The Way Forward

We need stronger public education on asthma, COPD, and other lung diseases.

More investment is required in healthcare systems to ensure medicines and diagnostic tools are available.

Communities, schools, and civil society must work together to break the stigma around chronic respiratory conditions.

💙 Breathing should not be a privilege. By combining knowledge, advocacy, and action, we can build a healthier Sierra Leone where everyone has the right support to breathe well.

[Sthefanie Petti]

Hi, Lamin! This is a fantastic assessment of chronic lung health in SL. What initiatives is your organization currently taking or planning to take to challenge treatment and specialist access barriers and raise awareness? And how can our community help?

[Alexandru Corlateanu]

Hello All! Its great forum! I am Alexandru Corlateanu from Coalition for Respiratory Health from Moldova! Happy to be connected to all of you!

[Vildana Mujkic]

Hi Alexandru, great to see you here. Looking forward to hear more from you and your organisation.

[Ruth Tal-Singer]

Nice to see people engage in the conversation! Great Summit!!

[Vildana Mujkic]

Great community!

[Melanie Funk]

It would be great to share photos here. Can we do that?

[Jacob Shumaker]

Hi Melanie, excellent question! If you have a picture shared on Facebook or your website, this would be the easiest way to share photos.

When replying, you can select the IMG icon form the top navigation bar and this will allow you to input the URL of your image.

At this time, there is no functionality to directly integrate a photo, but this is a fantastic potential feature improvement.

[Kristen Willard]

Who is going to be at Day 2 of the GAAPP Summit?

[Vildana Mujkic]

I am so excited for Day 2!

[Kristen Willard]

Who is going to be at Day 2 of the GAAPP Summit?

[Melanie Funk]

See you there!

[Kristen Willard]

Who is going to be at the GAAPP SUmmit Dinner?

[Karen Rance]

Leadership in the non-profit space can look very different from that in other sectors – balancing mission, limited resources, and the needs of diverse stakeholders. I’d love to hear your perspective: What characteristics do you think make a strong non-profit leader? Is it vision? Resilience? The ability to build community partnerships? Or something else entirely? Share your thoughts in the comments – I’m curious to learn from the experiences of this community.

[Vildana Mujkic]

Beyond business skills, a true patient organization leader must embody empathy and people-centeredness, coupled with transparency, integrity, and honesty. These values are the foundation of trust and credibility, ensuring the organization genuinely serves the needs of patients and their families.

[Vildana Mujkic]

Beyond business skills, a true patient organization leader must embody empathy and people-centeredness, coupled with transparency, integrity, and honesty. These values are the foundation of trust and credibility, ensuring the organization genuinely serves the needs of patients and their families.

[Sthefanie Petti]

Strong leading forces in our nonprofit world are people who can manage and lead a movement. They can feel the pain points of our community and turn them into a powerful drive for change. This means bringing all stakeholders together—people with a condition, caregivers, healthcare professionals, policymakers, and industry—and making them feel heard and valued. It’s about finding common ground, even when it seems impossible!

[Kristen Willard]

I love this question and your thoughtful comments about it. Integrity, approachability, dedication … and I love your comment about not only being the leader of the organization’s large-scale vision but also someone who makes each contributor feel heard. No easy feat and great leaders do this beautifully.

[Sthefanie Petti]

See you online or in person for the GAAPP Summit, everyone!!!

[Jacob Shumaker]

So excited for everyone! GAAPP Summit will be so much fun!

[Kristen Willard]

Can someone please remind me how to submit a resource to the Knowledge Hub?

[Jacob Shumaker]

Hey Kristen! Great question – if you navigate to the top tab of Community and Professional Network > Submit a Resource, you can fill out the form to share with GAAPP!

[Stephanie Williams]

Thanks for posting the directions, Jake. It seems pretty easy to do and it looks like there are already several resources there to look through. As people join us, I bet they will want to add some of their favorites, too!

[Karen Rance]

We all agree that knowledge grows stronger when it is shared. That’s why we’re so excited to introduce a new feature of our Knowledge Hub, designed for our member organizations around the world to connect, learn, and support one another. The two simple tools, accessible on the Home page, make this possible: “Donate Time” and “Receive Help.” Donate Time allows members to share their expertise, whether that’s mentoring a colleague, reviewing a resource, or offering guidance on a project. Even a small amount of time can make a big difference for another organization navigating similar challenges. Receive Help allows members to ask for support in areas where they want to grow – whether it’s advocacy strategy, patient education, digital tools, or scientific update. I plan to use these features to strengthen collaboration across borders. I hope to share lessons learned and best practices from our world. By receiving help, I can tap into the incredible global network of knowledge with GAAPP to bring fresh ideas and resources to reality. Together, we can raise the bar for patient advocacy and care worldwide. The Knowledge Hub is more than a resource – it is a community built on generosity, collaboration, and shared purpose.

[Vildana Mujkic]

Thanks Karen. I really like the idea of “Donate Time” and “Receive Help” – it shows how much stronger we are when we support each other. I am excited to see how these tools will help us connect, share best practices, and bring new ideas into our work for patients. I believe that this is a process of making collaboration so practical and meaningful.

[Stephanie Williams]

What a fantastic way to highlight the true spirit of collaboration! These tools will make it so much easier for organizations to learn from one another and amplify their impact. I’m excited to see the Knowledge Hub grow into a space where generosity and shared expertise truly strengthen patient advocacy worldwide.

[Vildana Mujkic]

Hi everyone,
What’s your favorite (preferably free!) tool for creating graphics and social posts?
Thanks!

[Jacob Shumaker]

Hi Vildana! Victor and Kristen’s suggestions are excellent – Canva is truly amazing. If you are looking for something a bit more flexible and technical, I’d recommend Canva!

[Victor Gascon Moreno]

Hi Vildana, my favourite tool is CANVA because it’s easy to use and you can work online without having to download any software! Also,o it has a FREE PRO version for NGOs, which is great; however, recently I have been exploring AI tools as they can create some content or infographics that are very useful when you can´t find a picture or graphic that matches your need!

[Ruth Tal-Singer]

I use chatGpT to create summary graphics then I edit in pdf. Editor as I’m lost in canva

[Vildana Mujkic]

Great idea. Thanks Ruth for sharing.

[Kristen Willard]

I love working in Canva too – one of the best parts of using the software is all the free stock images and design elements you can use. Canva is helpful in particular for those of us who are not trained in design.

[Vildana Mujkic]

Have you tried Vista?

[Kristen Willard]

I haven’t heard of it but now I’m interested! https://create.vista.com/

[Jacob Shumaker]

Hey everyone! Excited to be here!

[Vildana Mujkic]

Hi Jake. Great to see you!

[Stephanie Williams]

Hello everyone! I hope you are all doing well. As I join the group, I would like to introduce myself. I am a respiratory therapist who worked for many years in hospital and home care settings. But before I became a respiratory therapist, I was a schoolteacher. In my work with respiratory patients, I found that I very much enjoyed educating them about what was happening with their lungs. That love of teaching and sharing information has led me here – to GAAPP. And I am so glad it did! I can’t wait to get to know you all and encourage you in your work!

[Vildana Mujkic]

Welcome to the group! It is wonderful to have you here with your unique mix of experience in both teaching and respiratory care. That passion for educating patients really shines through your introduction, and it is something so valuable for our community. Looking forward to learning from your insights and collaborating with you here.

[Ruth Tal-Singer]

Hello friends!

[Vildana Mujkic]

Hi there. Great to see you.

[Kristen Willard]

So nice to “meet” you!

[Sthefanie Petti]

Can we use our preferred language here or do we post in English?

[Stephanie Williams]

Great question, Sthefanie! And thanks for the response, Victor. I hope we get lots of people coming here to get and give support.

[Victor Gascon Moreno]

Yes, Sthefanie! While English is the official language of GAAPP and we encourage its use so everyone can join and contribute to the conversations, we completely understand that not everyone feels fully comfortable in English. Sometimes certain thoughts and feelings are best expressed in your native language—so please feel free to use the language in which you feel most confident and at ease.

[Kristen Willard]

Hi everyone! A question for the group: what is the best capacity-building resource your nonprofit has ever used?

[Vildana Mujkic]

Hello Kristen,
There are many great resources but the ones I would especially recommend are:
https://www.iapo.org.uk/advocacy-fieldbook
https://www.eu-patient.eu/Capacity-Building-programme/
https://nonprofitleadershiplab.com/

[Jacob Shumaker]

The community forum where member organizations come together to share insights, exchange ideas, and support one another. It serves as a collaborative space to discuss challenges, celebrate successes, and strengthen connections across the GAAPP network.

Please review the GAAPP Knowledge Hub Guidelines before contributing.

[Lamin Sheik Kamara]

Hello!

Thank you for sharing this infographic it’s clear, engaging, and really highlights the experiences of people living with moderate/severe asthma. I think it’s an excellent resource that I can use both “as-is” to share with my community and also extract key pieces of information to integrate into awareness campaigns and educational sessions. I plan to use it in social media posts, community workshops, and discussions with patients to help them better understand asthma management and advocate for their own care.

Really appreciate the effort that went into making the results so accessible it will be a valuable tool for outreach and education!

Best regards,
Lamin.

[Kristen Willard]

Thank you so much for sharing more about your work in Sierra Leone. We appreciate all you are doing for your community!

[Author]

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