Alpha-1 Europe Alliance asbl

11/06/2026

🇮🇪 Mapping Alpha-1 care resources in 𝐈𝐫𝐞𝐥𝐚𝐧𝐝

has a developing network of specialised care, research participation, and patient support services for people living with Alpha-1 Antitrypsin Deficiency (AATD). The national patient organisation, Alpha-1 Foundation Ireland, plays a central role in advocacy, awareness, and community support across the country.

🔹 Access to specialised expertise
Beaumont Hospital was designated the National Centre of Expertise for Alpha-1 Antitrypsin Deficiency ( ) in 2016 by the Department of Health and the HSE. This was in recognition of the excellent clinical services at Beaumont Hospital, the research unit in the RCSI Department of Medicine at Beaumont, and the patient support services provided by Alpha-1 Foundation Ireland.

🔹 Access to treatment
Augmentation therapy is not reimbursed in Ireland and is only available out-of-pocket. This creates an important unmet need for disease-modifying therapies that address the underlying cause of rather than only managing symptoms.

🔹 Registries and European research collaboration
Ireland is actively involved in research initiatives, including EARCO participation, contributing to European data collection and collaboration to improve Alpha-1 care and outcomes. The country also maintains the National Alpha-1 Registry, supporting clinical research and long-term patient monitoring: https://www.alpha1.ie/irish-alpha-1-registry/

🔹 Holistic patient support
Alpha-1 Foundation Ireland provides information, advocacy, and community support for individuals and families affected by AATD. The organisation also promotes awareness and engagement through national activities and events, including the Annual Alpha-1 Patient and Family Conference, held each October.
👉For a report on the 2025 conference visit: https://www.alpha1.ie/alpha-1-patient-family-conference-2025/

🔗 More info: https://www.alpha1.ie/

Together, these resources help strengthen awareness, research participation, and patient support for Alpha-1 in Ireland, while highlighting the ongoing need for improved access to effective therapies.



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)

09/06/2026

We are proud to support and endorse the 𝟗𝐭𝐡 𝐖𝐨𝐫𝐥𝐝 𝐁𝐫𝐨𝐧𝐜𝐡𝐢𝐞𝐜𝐭𝐚𝐬𝐢𝐬 𝐂𝐨𝐧𝐟𝐞𝐫𝐞𝐧𝐜𝐞, taking place in Hannover from 24–27 June 2026, organized by EMBARC - The European Bronchiectasis Network.

Our colleague Marion Wilkens, Chair of Alpha-1 Deutschland e.V., will be attending in person, representing the Alpha-1 community.

We are excited to take part in this important event and to help raise awareness of the connection between and .

👉For more information, please visit: https://www.world-bronchiectasis-conference.org/2026/



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)

09/06/2026

🟡 Important insights on the implications of disease in .
This study helps deepen understanding and raises awareness of the need for careful monitoring of liver health in people with severe , which may support earlier identification and better clinical management.

🧬 Can signs of liver disease be found in people with severe Alpha-1 antitrypsin deficiency (AATD) before they appear in routine blood tests?

Researchers followed people with severe AATD from birth to around the age of 50 and found signs of early liver changes, even in people without symptoms and whose blood tests appeared normal.

Learn more: https://europeanlung.org/en/news-and-blog/study-finds-early-signs-of-liver-damage-in-adults-with-alpha-1-antitrypsin-deficiency/

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.