Alpha-1 Europe Alliance asbl

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

15/10/2026

🫁 Are you living with alpha-1 antitrypsin deficiency ( ), caring for someone who is, or looking to learn more about the condition?

𝗝𝗼𝗶𝗻 𝘂𝘀 𝗳𝗼𝗿 𝗮 𝗳𝗿𝗲𝗲 𝗼𝗻𝗹𝗶𝗻𝗲 𝗽𝗮𝘁𝗶𝗲𝗻𝘁 𝘄𝗲𝗯𝗶𝗻𝗮𝗿 𝗼𝗻 𝟰 𝗡𝗼𝘃𝗲𝗺𝗯𝗲𝗿 𝟮𝟬𝟮𝟲.

This session is designed for people living with AATD, families, carers and patient organisations. Hear the latest updates on research and care, learn what current developments could mean for people affected by Alpha-1 and ask your questions directly to researchers, healthcare professionals and patient representatives.

💬 Live Q&A included
📅 4 November 2026
🕠 18:30–19:45 CET
💻 Online via Zoom
🌐 The conference will be held in English. A live transcription service will enable participants to generate captions in more than 60 languages.
👉 Register now: https://us02web.zoom.us/webinar/register/WN_pGjSO8PVTd21_wvK6PpmFQ



European Lung Foundation European Respiratory Society
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 🇵🇹 Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

14/10/2026

📅 Don’t miss this opportunity to learn, connect with others and share experiences with the Alpha-1 community! 💙

🎤 Meet the panel for our .

➡️ Register now: https://europeanlung.org/en/get-involved/events/alpha-1-patient-webinar-latest-research-updates-and-live-qa/

Join our free webinar for people living with and affected by alpha-1 antitrypsin deficiency (AATD).

Hear the latest research updates, learn more about our new Alpha-1 Patient Advisory Group, discover opportunities to get involved in research and awareness activities, and take part in a live Q&A with experts and community members.

📅 4 November 2026
🕠 18:30–19:45 CET
💻 Online

This webinar is delivered with the support of our partners the European Alpha-1 Research Collaboration (EARCO), European Respiratory Society, Alpha-1 Europe Alliance asbl, Alpha1 Deutschland e.V. & Alpha-1 UK.

14/10/2026

Our 𝑶𝒄𝒕𝒐𝒃𝒆𝒓 𝑵𝒆𝒘𝒔𝒍𝒆𝒕𝒕𝒆𝒓 is out! 📢

This month, we celebrate 3 years of the Alpha-1 Europe Alliance! 🎉
In this edition:
🔹Our President’s anniversary message
🔹Launch of “Alpha-1 Voices”: seven real stories from across Europe
🔹Save the date: plasma supply webinar on 26 November - in collaboration with PPTA Europe
🔹News from , , and
🔹Upcoming AATD community events from European Respiratory Society and European Lung Foundation

Three years on, we remain united by our shared commitment to improving the lives of people affected by , and we’re grateful to everyone who has been part of this journey.

Through advocacy, collaboration, research and patient engagement, we continue to build a stronger voice for the Alpha-1 community across Europe. 💜

📬 Stay connected! Subscribe via our website to receive future editions.



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 🇵🇹 Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

13/10/2026

🧬 Sharing lives: 𝗹𝗶𝘃𝗲𝗿 𝘁𝗿𝗮𝗻𝘀𝗽𝗹𝗮𝗻𝘁𝗮𝘁𝗶𝗼𝗻 in AATD

For people living with Alpha-1 Antitrypsin Deficiency ( ) and severe liver disease, liver transplantation can be a life-changing treatment.

A donated liver can restore liver function and, because the new liver produces normal Alpha-1 Antitrypsin, can also address the underlying protein deficiency.

Behind every transplant is a donor — and a decision that can give someone the opportunity to live a new chapter.

💙 This European Donation Day, let’s raise awareness of the life-changing power of organ donation.

Sharing lives. Sharing hope.



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

12/10/2026

🫁 Sharing lives: 𝗹𝘂𝗻𝗴 𝘁𝗿𝗮𝗻𝘀𝗽𝗹𝗮𝗻𝘁𝗮𝘁𝗶𝗼𝗻 in Alpha-1

For some people living with Alpha-1 Antitrypsin Deficiency ( ), lung transplantation can offer a new opportunity when advanced lung disease significantly affects everyday life.

Thanks to advances in transplantation, surgery and long-term care, people with AATD can benefit from transplantation and continue living life beyond their previous limitations.

Behind every transplant is an extraordinary act of generosity — one person’s decision to donate can change another person’s life.

💙 This European Donation Day, let’s recognise the donors, families and healthcare professionals who make transplantation possible.

Sharing lives. Sharing hope.

10/10/2026

🫶 Sharing lives.

Today we mark 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 𝗗𝗮𝘆 𝗳𝗼𝗿 𝗢𝗿𝗴𝗮𝗻, 𝗧𝗶𝘀𝘀𝘂𝗲 𝗮𝗻𝗱 𝗖𝗲𝗹𝗹 𝗗𝗼𝗻𝗮𝘁𝗶𝗼𝗻 (𝗘𝗗𝗗) — a day to recognise the profound impact that donation can have on people living with serious and life-threatening conditions.

For people living with Alpha-1 Antitrypsin Deficiency ( ), transplantation can become a life-changing option when the condition reaches an advanced stage.

A donated organ can mean more than a transplant. It can mean more time, more possibilities and a new chapter in life.

💙 This European Donation Day, let’s raise awareness of the importance of organ, tissue and cell donation and the difference it can make.

Sharing lives. Sharing hope.



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 🇵🇹 Asociatia Alfasim 🇷🇴 (Romania) Alfa España 🇪🇸 (Spain) Fundación Lovexair 🇪🇸 (Spain) Alpha-1 Switzerland 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

09/10/2026

As comes to a close, we join the global community of patients who rely on Plasma-Derived Medicinal Products (PDMPs) in thanking all plasma donors for their generosity. 🩸 From the Alpha-1 community, thank you for helping make treatments possible for people living with and many other conditions. 💙 𝑻𝒉𝒂𝒏𝒌 𝒚𝒐𝒖, 𝒅𝒐𝒏𝒐𝒓𝒔!