Alpha-1 Europe Alliance asbl

04/06/2026

🇩🇪 Mapping Alpha-1 care resources in 𝐆𝐞𝐫𝐦𝐚𝐧𝐲

Germany has a strong network of specialised centres, research initiatives, and patient support services dedicated to people living with Alpha-1 Antitrypsin Deficiency ( ). The German Alpha-1 association, Alpha-1-Antitrypsin in Deutschland, brings together 𝟭𝟭𝟱𝟮 𝗺𝗲𝗺𝗯𝗲𝗿𝘀 across the country.

🔹 Access to specialised expertise

Germany has several specialised Alpha-1 centres nationwide, offering diagnosis, follow-up, and multidisciplinary respiratory and liver care through experienced healthcare teams. A full directory of specialised centres is available here: https://www.alpha-1-center.org/

🔹 Access to treatment

Augmentation therapy is fully reimbursed in Germany. Plasma collection operates through a mixed system, where both public and private models coexist.

🔹 Registries and European research collaboration

Germany participates in the EARCO Registry (9 centres), supporting European collaboration and data collection to improve Alpha-1 care and research. In addition, Germany also hosts the European Reference Centre for Alpha-1 Antitrypsin Deficiency, which supports research and long-term monitoring of liver involvement in AATD across several countries. More information: https://www.ukaachen.de/kliniken-institute/alpha1-leberzentrum/das-zentrum/

🔹 Holistic patient support

The national patient organisation Alpha1 Deutschland e. V. provides information, advocacy, community support, and a wide range of activities for people affected by Alpha-1 Antitrypsin Deficiency and their families. This includes regular events across the country, as well as weekly lung sports and memory training sessions. Upcoming activities and events can be found here: https://alpha1-deutschland.org/veranstaltungen-ubersicht

👉 To learn more about Alpha-1 care and support in , follow and connect with the national association.

🔗 More info: https://alpha1-deutschland.org/

Together, these resources help strengthen access to specialised Alpha-1 care, research participation, and patient support across Germany.



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)

02/06/2026

🇧🇪 Mapping Alpha-1 Care Resources in 𝐁𝐞𝐥𝐠𝐢𝐮𝐦

Belgium has an established network of specialised centres and healthcare professionals supporting people living with Alpha-1 Antitrypsin Deficiency ( ).

🔹 Access to specialised expertise
Belgium has 3 specialised Alpha-1 care centres located in:
• Erasme Hospital (Brussels) – https://www.erasme.be/fr/services-erasme
• UZ Leuven (Gasthuisberg) – https://www.uzleuven.be/fr/gasthuisberg
• UZ Gent – https://www.uzgent.be/
These centres also participate in the Registry, contributing to European collaboration and data collection in Alpha-1 care. In Belgium, the EARCO Registry is coordinated by Prof. Dr. Wim Janssens. In addition, a national liver registry is in place, coordinated by Prof. Dr. Jef Verbeek at UZ Leuven (Gasthuisberg).
🔹 Access to treatment
Augmentation therapy is partially reimbursed in Belgium. Since mid-2010, it has not been reimbursed for new patients, following a decision by the National Institute for Health and Disability Insurance (NIHDI/INAMI). In terms of plasma collection, Belgium operates a public system, with no financial compensation for donors.
🔹 Clinical research
New studies and research initiatives are expected to launch in the coming months, further advancing knowledge and care in the country.

👉 To learn more about Alpha-1 care and support in , follow and connect with 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗣𝗹𝘂𝘀 𝗮𝘀𝗯𝗹.
🔗 https://alpha1plus.be/



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)

31/05/2026

🚭 A1EA supports 𝗪𝗼𝗿𝗹𝗱 𝗡𝗼 𝗧𝗼𝗯𝗮𝗰𝗰𝗼 𝗗𝗮𝘆 𝟮𝟬𝟮𝟲 🚭

This year, World Health Organization (WHO) highlights how industry design choices — from flavouring and product appeal to digital promotion — contribute to initiation and ni****ne dependence. Behind the branding lies a simple reality: ni****ne addiction is difficult to break, but entirely preventable.

🫁 For people living with respiratory conditions, including Alpha-1 Antitrypsin Deficiency ( ), avoiding to***co exposure is one of the most important steps to protect long-term lung health and slow disease progression.

We stand with the global public health community in calling for:
📌 Stronger regulation of ni****ne and to***co industry practices
📌 Effective protection of children and young people from targeted advertising
📌 Greater access to cessation support across all countries

💡 The message is clear: prevention saves lives, and support to quit must be accessible to all.

📢 Join us in raising awareness and strengthening prevention efforts across Europe.
🔗 https://www.who.int/campaigns/world-no-to***co-day/2026

***coDay ***coFree

29/05/2026

Congratulations to Prof. McElvaney and the Alpha-1 Foundation Ireland team!

On behalf of the European Alpha-1 community, we are proud to celebrate this well-deserved recognition of your work in advancing research and improving understanding of the condition.

Professor Gerry McElvaney, Professor of Medicine at Royal College of Surgeons in Ireland and Respiratory Consultant at Beaumont Hospital, Beaumont, Dublin 9, has been awarded the 2026 Joachim Hilfenhaus Award by the Plasma Protein Therapeutics Association (PPTA).

This prestigious international award recognises outstanding contributions to the treatment and understanding of plasma protein deficiencies. Alpha-1 antitrypsin deficiency ( ) belongs to this family of plasma protein deficiencies and Professor McElvaney’s research over the last 40 years has led to new & improved treatments and care for people with Alpha-1. Alpha-1 advocate and patient Frank Willersinn from Alpha-1 Europe Alliance asbl presented Professor McElvaney with his award.

Read more: https://www.pptaglobal.org/material/professor-noel-gerard-mcelvaney-receives-the-2026-joachim-hilfenhaus-award

28/05/2026

In many countries, 13–15-year-olds are now using vapes more than adults. This is a warning sign.⚠️

To***co and ni****ne companies continue to target young people at a critical stage of brain and lung development, increasing the risk of early and long-term addiction.

But the impact goes beyond addiction — va**ng is not harmless:
🧠 Ni****ne is highly addictive and can impair brain development in under-25s
☠️ V**e aerosols contain toxic substances and ultrafine particles
🫁 Va**ng can damage lung health and increase the risk of respiratory disease
❤️ It is also associated with increased cardiovascular risk

Prevention is especially critical for people with respiratory conditions, including Alpha-1 Antitrypsin Deficiency (AATD), where protecting lung function early in life can have lifelong consequences. Avoiding exposure to ni****ne and inhaled toxins is a key part of preserving respiratory health.

Prevention today means healthier lungs tomorrow.

📢 Join us in raising awareness and strengthening prevention efforts:
🔗 https://www.who.int/campaigns/world-no-to***co-day/2026

***coDay ***coFree

27/05/2026

🇦🇹 Mapping Alpha-1 care resources in 𝐀𝐮𝐬𝐭𝐫𝐢𝐚

Austria has an established network of specialised centres and healthcare professionals supporting people living with Alpha-1 Antitrypsin Deficiency ( ).

🔹Access to specialised expertise
Austria has 8 specialised Alpha-1 care centres across the country, located in Vienna, Upper Austria, Salzburg, Styria, Carinthia and Vorarlberg. These clinics provide dedicated Alpha-1 consultations, diagnosis, follow-up, and multidisciplinary respiratory care. Patients with liver involvement are also managed at the Specialist Outpatient Clinic of the Department of Gastroenterology and Hepatology at the Medical University of Vienna (AKH Vienna).

🔹Access to treatment
Augmentation therapy is fully reimbursed in Austria. In terms of plasma collection, the country operates through a mixed system, combining both public and private models.

🔹Registries and European research collaboration
Austria participates in the Registry, contributing to European collaboration and data collection in Alpha-1 care, and coordinated by Dr Florian Vafai-Tabrizi at Klinik Ottakring at national level.

🔹Holistic patient support
The national organisation 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗢𝗲𝘀𝘁𝗲𝗿𝗿𝗲𝗶𝗰𝗵 also provides psychosocial support initiatives, including an Alpha-1 care programme with psychologist Andrea Schuh, as well as community activities and workshops.

Together, these resources help strengthen access to specialised care and patient support across

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

26/05/2026

The Alpha-1 community mourns the loss of our friend Fernando Augusto Almeida Pinto, President of AA1P- Associação Alfa 1 de Portugal
​
Fernando was a true warrior, diagnosed with at just 37 years old. After a long and courageous journey — including a bilateral lung transplant in 2011 and a remarkable recovery that led him to complete the Camino de Santiago — he dedicated his life to supporting and inspiring others living with the same condition.​
​
We are deeply grateful for his leadership, his resilience, and the hope he gave to so many. Above all, we honour his heartfelt gratitude to his donor and the gift of a second chance at life he embraced so fully.
​
🤍Our heartfelt condolences go to his wife, Isabel; his son, Danny; his daughter, Jenny; his grandchildren; and all his family and friends.
​
🕊️ Rest in peace, Fernando — you will always remain in our hearts.

25/05/2026

We stand with our friends at AA1P- Associação Alfa 1 de Portugal during this very sad and difficult time.

Fernando was an inspiring example of courage, determination, and resilience for our community, and we are deeply saddened by his passing.🤍

We send our heartfelt condolences and warmest support to his family, friends, and all those who knew and loved him.

🕊️ Rest in peace, Fernando.

É com profunda tristeza que a AA1P comunica o falecimento de Fernando Pinto, Presidente da Associação.

Neste momento de dor, a Associação está de luto e une-se em memória de quem dedicou tanto do seu tempo, da sua energia e do seu compromisso à AA1P e à comunidade Alfa.

Fernando Pinto deixa-nos um legado de trabalho, dedicação e serviço à causa Alfa, marcado pela defesa dos doentes, pelo apoio às famílias e pelo empenho constante em dar mais visibilidade à Deficiência de Alfa-1 Antitripsina.

A AA1P presta as mais sentidas condolências à sua família, amigos e a todos os que com ele partilharam este caminho. Uma palavra muito especial de solidariedade e carinho para a sua esposa, Isabel Carvalho Pinto, Presidente da Assembleia Geral, neste momento particularmente difícil.

A comunidade Alfa perde uma referência. Todos nós perdemos um amigo.

A sua dedicação permanecerá na história da Associação e na memória de todos nós.

A data e o horário das cerimónias fúnebres serão comunicados oportunamente.

25/05/2026

🌍 𝗝𝗼𝗶𝗻 𝘁𝗵𝗲 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗔𝗱𝘃𝗶𝘀𝗼𝗿𝘆 𝗚𝗿𝗼𝘂𝗽 (𝗣𝗔𝗚)!

People living with Alpha-1, as well as family members and carers, are invited to join a new European Patient Advisory Group supported by the European Lung Foundation.

This is an opportunity to help shape research, education, and care across , working alongside patients, healthcare professionals, and partners.

💬 Get involved by:
• Sharing your lived experience
• Giving feedback on research and patient information
• Helping improve awareness and care
• Contributing ideas for future projects

🤝 Participation is flexible — from occasional email input to online meetings via Zoom.

👥 Who can join?
Adults (18+) with Alpha-1 experience as a patient, family member, or carer, able to communicate in English.

🔗 Learn more: https://europeanlung.org/en/people-and-partners/patient-advisory-groups/alpha-1-patient-advisory-group/

📩 Interested? Contact: [email protected]

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)

21/05/2026

Sharing latest updates from our colleagues in Ireland! 🇮🇪

Alpha-1 Foundation Ireland visited HSE Ireland Letterkenny University Hospital in Donegal today. Donegal has a high prevalence of Alpha-1 so the visit is an important chance to raise awareness and talk about the exciting new therapies being developed, including some being trialled at Beaumont Hospital, Beaumont, Dublin 9 and by researchers at Royal College of Surgeons in Ireland. It was lovely to meet some old friends too. Thanks to Patricia McLaughlin and colleagues for the invite and the warm welcome!