Alpha-1 Europe Alliance asbl

30/10/2026

𝗣𝘂𝘁𝘁𝗶𝗻𝗴 𝘁𝗵𝗲 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝘃𝗼𝗶𝗰𝗲 𝗮𝘁 𝘁𝗵𝗲 𝗵𝗲𝗮𝗿𝘁 𝗼𝗳 𝗿𝗲𝘀𝗲𝗮𝗿𝗰𝗵 | 𝗘𝗥𝗦 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗔𝗻𝘁𝗶𝘁𝗿𝘆𝗽𝘀𝗶𝗻 𝗖𝗼𝗻𝗳𝗲𝗿𝗲𝗻𝗰𝗲 𝗶𝗻 𝗕𝗮𝗿𝗰𝗲𝗹𝗼𝗻𝗮

Our President, 𝗙𝗲𝗿𝗻𝗮𝗻𝗱𝗮 𝗔𝘀𝗽𝗶𝗹𝗰𝗵𝗲 𝗙𝗲𝗿𝗿𝗼, joined the patient panel alongside 𝗞𝗮𝗿𝗲𝗻 𝗢'𝗛𝗮𝗿𝗮, 𝗠𝗮𝗿𝗶𝗼𝗻 𝗪𝗶𝗹𝗸𝗲𝗻𝘀 and 𝗔𝗹𝗳𝗼𝗻𝘀 𝗠. 𝗩𝗶𝗻̃𝘂𝗲𝗹𝗮.

Drawing on her experience, Fernanda highlighted the challenges people living with may face when taking part in clinical research, and the importance of involving patients from the very beginning — when research questions, study designs and practical arrangements are still being shaped.

Better research starts with listening to the people it aims to serve. Meaningful patient involvement can help make research more relevant, inclusive and responsive to patients’ real-life needs.

Read the full story on our website 👉
https://alpha1europe.org/news/patients-as-partners-a1ea-brings-the-patient-voice-to-the-ers-alpha-1-antitrypsin-conference-2026/

A big thank you to the European Respiratory Society, and the organising committee for the invitation and for making space for the patient perspective in this important scientific meeting. We look forward to continuing these conversations and working together to bring patient voices into research and innovation. 💙



Alpha 1 Österreich 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1-Antitrypsin in Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa-1-AT 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden / Alpha-1 Nordic 🇩🇰 🇫🇮 🇳🇴 🇸🇪 (Denmark, Finland, Norway, Sweden) AA1P- Associação Alfa 1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

29/10/2026

When we think about AATD, we often think about the lungs. Alberto’s story reminds us to look further. ⚠️

Alberto from Spain 🇪🇸 was diagnosed with Alpha-1 Antitrypsin Deficiency ( ), and for seven years he didn’t know the condition was also affecting his liver. When he finally found out, it had progressed to advanced liver disease. In his interview, he openly shares what that diagnosis meant for him and his daily life.

He also has a message for our whole community. To patients and caregivers: stay hopeful, and lean on one another. To healthcare professionals: please consider both lung and liver health when caring for people with AATD.

🎥 Watch Alberto’s full interview (English subtitles) on YouTube: https://youtu.be/xyT3ycqIhJY

You’re not alone. The AATD community is here to support you.

👉 Alpha-1 Europe Alliance: https://alpha1europe.org/
👉 Alpha-1 Spain: https://alfa1.org.es/



Alpha 1 Österreich 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1-Antitrypsin in Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa-1-AT 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden / Alpha-1 Nordic 🇩🇰 🇫🇮 🇳🇴 🇸🇪 (Denmark, Finland, Norway, Sweden) AA1P- Associação Alfa 1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

27/10/2026

Patient voices are critical to meaningful research. Marion Wilkens and Karen O'Hara share how lived experience is helping shape research and care.

Learn more and join us on 4 November 👉https://europeanlung.org/en/news-and-blog/qa-making-a-difference-in-alpha-1-research-and-care/

27/10/2026

Meet Stilla from Austria 🇦🇹

Living with Alpha-1 Antitrypsin Deficiency ( ) has changed her health and her everyday life. It has also made her stronger, and a voice for others.

Today, Stilla raises awareness, encourages people to get tested and reminds our community that staying positive and staying connected can help.

In her full interview, you’ll hear about:
🫁 Her journey to an Alpha-1 diagnosis
🫁 Access to treatment in Austria
🫁 Life with AATD and bronchiectasis
🫁 The role of the patient community
🫁 A message of hope

🎥 Watch Stilla’s full interview on YouTube: https://youtu.be/hy9J80FYdVU?si=JBSip9BrUIreeo9z

Together, we’re stronger. 💙

AlphaCommunity PatientVoice

27/10/2026

Stilla lives with Alpha-1 Antitrypsin Deficiency ( ), a rare genetic condition that can affect the lungs, liver and skin. In this video, she openly shares her journey: the changes in her health, the impact on everyday life and what it’s like to navigate care and treatment in 🇦🇹

Through it all, Stilla faces life with courage and determination, and she’s using her voice to help others. As an active member of the Alpha-1 community in Austria, Alpha 1 Österreich, she raises awareness, encourages people to get tested and reminds us why earlier diagnosis matters.

Her message to all of us: even when Alpha-1 brings uncertainty, staying positive and staying connected to the community can help.

🎥 Get to know Stilla’s story on YouTube: https://youtu.be/hy9J80FYdVU?si=1K3DegQui4AYcxNG

👉 Alpha-1 Europe Alliance: https://alpha1europe.org/
👉 Alpha-1 Austria: https://www.alpha1-oesterreich.at/



Alpha 1 Österreich 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1-Antitrypsin in Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa-1-AT 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden / Alpha-1 Nordic 🇩🇰 🇫🇮 🇳🇴 🇸🇪 (Denmark, Finland, Norway, Sweden) AA1P- Associação Alfa 1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

26/10/2026

A1EA at the European Medicines Agency 🇪🇺

Our Vice President 𝐇𝐞𝐢𝐧𝐳 𝐒𝐭𝐮𝐭𝐳𝐞𝐧𝐛𝐞𝐫𝐠𝐞𝐫 represented the European Alpha-1 community at the 𝗘𝗠𝗔’𝘀 𝗔𝗻𝗻𝘂𝗮𝗹 𝗣𝗖𝗪𝗣/𝗛𝗖𝗣𝗪𝗣 𝗠𝗲𝗲𝘁𝗶𝗻𝗴 with Eligible Organisations in Amsterdam.

Since A1EA was recently accepted as an eligible patients’ and consumers’ organisation, we are now a formally recognised voice for the patient perspective throughout the lifecycle of a medicine.

Over two days, discussions covered, among other topics:
▪️ The new EU pharmaceutical legislation
▪️ Plasma self-sufficiency under the SoHO regulation
▪️ The availability and supply of medicines
▪️ The EU list of critical medicines

Heinz came back with new contacts and a clear message: Alpha-1 patients must be ready to contribute as the authorisation process evolves.

🔗Read the full story: https://alpha1europe.org/news/a1ea-takes-part-in-the-european-medicines-agencys-annual-meeting/



Alpha 1 Österreich 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1-Antitrypsin in Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa-1-AT 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden / Alpha-1 Nordic 🇩🇰 🇫🇮 🇳🇴 🇸🇪 (Denmark, Finland, Norway, Sweden) AA1P- Associação Alfa 1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

23/10/2026

Proud to see Fernanda Aspilche Ferro, President of Alpha-1 Europe Alliance, representing the patient community at the first ERS Alpha-1 Antitrypsin Conference in Barcelona! 💙

Patient voices and lived experiences are essential to shaping better care and improving the lives of people living with .

Looking forward to this important event!

Attending the Alpha-1 Antitrypsin Conference 2026 ( ) this week in Barcelona?

Help us share this opportunity with people living with alpha-1, carers and patient networks: https://europeanlung.org/en/get-involved/events/alpha-1-patient-webinar-latest-research-updates-and-live-qa/

Following the conference, the European Lung Foundation & partners will host the , covering the latest developments in alpha-1 antitrypsin deficiency (AATD) research, including key updates from the conference and what they could mean for people living with alpha-1.

💬 The webinar will also include a live Q&A with researchers, healthcare professionals and patient representatives.

📅 4 November 2026
🕠 17:30–18:45 CET
💻 Online

European Respiratory Society Alpha-1 Europe Alliance asbl Alpha-1 UK

21/10/2026

Behind every diagnosis is a person with a story worth hearing.

For years, 𝐊𝐧𝐮𝐭 from 𝐍𝐨𝐫𝐰𝐚𝐲 lived with ongoing lung problems before finally getting an answer: Alpha-1 Antitrypsin Deficiency ( ). Then came emphysema, and the challenge of managing a rare condition while facing barriers to accessing treatments such as augmentation therapy.
Knut chose to turn that experience into connection. Today he is helping build Alfa-1 Norden / Alpha-1 Nordic, a community that brings together people with Alpha-1 across the Nordic countries to share experiences, raise awareness and advocate for better access to care.

When we share our stories, we help others recognise the signs, show everyone what life with a rare disease truly looks like, and remind every patient or caregiver that they are never alone. Together, we are a community. 💙

🎥 Watch Knut’s full interview on YouTube:
https://youtu.be/kNdmc9opsWg?si=Aeo4VuqOoGE1RiFn



Alpha 1 Österreich 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1-Antitrypsin in Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa-1-AT 🇮🇹 (Italy) 🇳🇱 (Netherlands) Alfa-1 Norden / Alpha-1 Nordic 🇩🇰 🇫🇮 🇳🇴 🇸🇪 (Denmark, Finland, Norway, Sweden) AA1P- Associação Alfa 1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

19/10/2026

🎂 𝗧𝗵𝗿𝗲𝗲 𝘆𝗲𝗮𝗿𝘀 𝗼𝗳 𝗔𝟭𝗘𝗔. 𝗧𝗵𝗼𝘂𝘀𝗮𝗻𝗱𝘀 𝗼𝗳 𝘃𝗼𝗶𝗰𝗲𝘀. 𝗢𝗻𝗲 𝘀𝗵𝗮𝗿𝗲𝗱 𝗺𝗶𝘀𝘀𝗶𝗼𝗻.

Today, the Alpha-1 Europe Alliance celebrates its 𝟯𝗿𝗱 𝗮𝗻𝗻𝗶𝘃𝗲𝗿𝘀𝗮𝗿𝘆.

Since 2023, the Alpha-1 Europe Alliance has grown into a community of 13 national organisations, standing together for more than 4,500 people living with Alpha-1 across Europe.

But behind every number is a person. A story. A family. A life.🤍

These are the people who inspire our work every day and remind us why we keep working together for earlier diagnosis, better care, access to treatment and a stronger future for the Alpha-1 community.

🗣️ To mark this anniversary, we’re launching “Alpha-1 Voices” — a series sharing the experiences and perspectives of people and families living with Alpha-1 across Europe.

Over the coming weeks, we’ll be sharing their stories.

Because every voice matters. Every story brings us closer. And every life counts.

A ℎ𝑒𝑎𝑟𝑡𝑓𝑒𝑙𝑡 𝑡ℎ𝑎𝑛𝑘 𝑦𝑜𝑢 to everyone who makes this work possible: our member organisations, working every day with their local communities; our Board members, whose commitment and vision help drive a united European Alpha-1 community; our supporters and funding partners, who make our work and projects possible; and, above all, the Alpha-1 community, whose strength and trust inspire us to keep going.

Thank you all for being part of this journey!

🎉Happy 3rd anniversary, A1EA — and here’s to many more years of working together.



Alpha 1 Österreich 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1-Antitrypsin in Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa-1-AT 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden / Alpha-1 Nordic 🇩🇰 🇫🇮 🇳🇴 🇸🇪 (Denmark, Finland, Norway, Sweden) AA1P- Associação Alfa 1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

19/10/2026

🎂 𝗧𝗵𝗿𝗲𝗲 𝘆𝗲𝗮𝗿𝘀 𝗼𝗳 𝗔𝟭𝗘𝗔. 𝗧𝗵𝗼𝘂𝘀𝗮𝗻𝗱𝘀 𝗼𝗳 𝘃𝗼𝗶𝗰𝗲𝘀. 𝗢𝗻𝗲 𝘀𝗵𝗮𝗿𝗲𝗱 𝗺𝗶𝘀𝘀𝗶𝗼𝗻.

Today, the Alpha-1 Europe Alliance celebrates its 𝟯𝗿𝗱 𝗮𝗻𝗻𝗶𝘃𝗲𝗿𝘀𝗮𝗿𝘆.

Since 2023, the Alpha-1 Europe Alliance has grown into a community of 13 national organisations, standing together for more than 4,500 people living with Alpha-1 across Europe.

But behind every number is a person. A story. A family. A life.🤍

These are the people who inspire our work every day and remind us why we keep working together for earlier diagnosis, better care, access to treatment and a stronger future for the Alpha-1 community.

🗣️ To mark this anniversary, we’re launching “Alpha-1 Voices” — a series sharing the experiences and perspectives of people and families living with Alpha-1 across Europe.

Over the coming weeks, we’ll be sharing their stories.
Because every voice matters. Every story brings us closer. And every life counts.

A ℎ𝑒𝑎𝑟𝑡𝑓𝑒𝑙𝑡 𝑡ℎ𝑎𝑛𝑘 𝑦𝑜𝑢 to everyone who makes this work possible: our member organisations, working every day with their local communities; our Board members, whose commitment and vision help drive a united European Alpha-1 community; our supporters and funding partners, who make our work and projects possible; and, above all, the Alpha-1 community, whose strength and trust inspire us to keep going.

Thank you all for being part of this journey!

🎉Happy 3rd anniversary, A1EA — and here’s to many more years of working together.

RareDisease PatientCentredCare UnitedforAlpha1