Alpha-1 Europe Alliance asbl

04/09/2026

𝑂𝘯𝑒 𝑚𝘰𝑛𝘵ℎ 𝑡𝘰 𝘨𝑜!
🩸
📅 5–9 October

This October, the Alpha-1 community in Europe joins 𝗜𝗻𝘁𝗲𝗿𝗻𝗮𝘁𝗶𝗼𝗻𝗮𝗹 𝗣𝗹𝗮𝘀𝗺𝗮 𝗔𝘄𝗮𝗿𝗲𝗻𝗲𝘀𝘀 𝗪𝗲𝗲𝗸 to raise awareness of the lifesaving medicines made possible by plasma donation.

For people living with Alpha-1 Antitrypsin Deficiency ( ), plasma can make a life-changing difference. Plasma-based augmentation therapy uses purified AAT protein from donated human plasma to help raise AAT levels in the blood and lungs.

Behind every treatment is a donor who made it possible. 💛

Together, let’s show how and help build a world where everyone who needs plasma-derived medicines can access them.

📣 Save the date: 5–9 October 2026
👉 Discover in Europe and find resources to get involved:
https://www.plasmaweek.org/ipaw-europe

26/08/2026

Proud to see our President, 𝗙𝗲𝗿𝗻𝗮𝗻𝗱𝗮 𝗔𝘀𝗽𝗶𝗹𝗰𝗵𝗲 𝗙𝗲𝗿𝗿𝗼, featured in the new RARE Revolution insider®.

An important opportunity to bring the patient voice closer to industry and highlight the priorities and needs of the Alpha-1 community.

🙌 Thank you to RARE Revolution Magazine for amplifying our voices and helping shape the conversation around rare diseases.



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)

25/08/2026

🫁 𝑊ℎ𝑎𝑡 𝑑𝑜𝑒𝑠 𝑡ℎ𝑒 𝑊𝑜𝑟𝑙𝑑 𝐻𝑒𝑎𝑙𝑡ℎ 𝐴𝑠𝑠𝑒𝑚𝑏𝑙𝑦 𝑟𝑒𝑠𝑜𝑙𝑢𝑡𝑖𝑜𝑛 𝑜𝑛 𝑙𝑢𝑛𝑔 ℎ𝑒𝑎𝑙𝑡ℎ 𝑚𝑒𝑎𝑛 𝑓𝑜𝑟 𝑝𝑎𝑡𝑖𝑒𝑛𝑡𝑠—𝑎𝑛𝑑 𝑓𝑜𝑟 #𝐸𝑢𝑟𝑜𝑝𝑒?​

One year after countries adopted the first-ever World Health Organization (WHO) Resolution on Integrated Lung Health, lung health has a stronger global mandate. ⏰ Now it's time to turn that commitment into action.​

For people living with respiratory diseases, including Alpha-1 Antitrypsin Deficiency ( ), these are not just policy priorities—they are essential steps towards better health and quality of life.​

The Resolution provides an important framework for advocacy, but Europe now needs a 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 𝗟𝘂𝗻𝗴 𝗛𝗲𝗮𝗹𝘁𝗵 𝗣𝗹𝗮𝗻 to translate global commitments into coordinated action and ensure everyone has the opportunity to breathe better.​

🎥 Watch and share the video: https://youtu.be/MVSWso8A5y8​

The patient explainer video marks one year since the adoption of th...

20/08/2026

🫁 Lung health deserves more than fragmented action. It deserves a shared European vision.​

Policies that influence lung health already exist—from clean air and to***co control to research, medicines, prevention and primary care. Yet too often, they operate in isolation, while millions of people continue to face delayed diagnosis, unequal access to care and preventable exposure to risk factors.​

A 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 𝗟𝘂𝗻𝗴 𝗛𝗲𝗮𝗹𝘁𝗵 𝗣𝗹𝗮𝗻 can bring these efforts together by delivering:​
✅ Stronger prevention​
✅ Earlier diagnosis​
✅ Equitable access to treatment and long-term care​
✅ Greater investment in research and innovation​
✅ Meaningful involvement of patients in shaping lung health policies​

For people living with respiratory diseases, including Alpha-1 Antitrypsin Deficiency ( ), this is about more than policy—it's about improving lives.​

The building blocks are already in place. Now Europe needs the political commitment to bring them together through a coordinated Lung Health Plan.​

Together, let's help Europe .​


📖 Learn more about the European Lung Health Plan: https://breathevision.eu/news/why-europe-needs-a-european-lung-health-plan-new-infographic/

19/08/2026

🫁 Europe needs a 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 𝗟𝘂𝗻𝗴 𝗛𝗲𝗮𝗹𝘁𝗵 𝗣𝗹𝗮𝗻.​

Respiratory diseases affect millions of people across Europe, yet lung health still lacks the coordinated political action it deserves.​

A comprehensive plan should be built on five key pillars:​
✅ Prevention – Reduce exposure to risk factors such as air pollution, to***co and unhealthy environments.​
🔍 Earlier diagnosis – Ensure timely diagnosis through better access to lung function testing, primary care and clear care pathways.​
💙 Access to treatment & long-term care – Guarantee equitable access to medicines, rehabilitation, follow-up care and patient support across Europe.​
💶 Investment – Match the burden of respiratory diseases with sustained funding for research, innovation, implementation and patient organisations.​
🤝 Patient involvement – Put patients and patient organisations at the heart of shaping, implementing and monitoring lung health policies.​

Everyone deserves the opportunity to breathe better. It's time to give lung health the political priority it deserves.​

04/08/2026

Every person deserves the chance to breathe better.​🌬️

Respiratory diseases affect millions of people across Europe, yet too many still face delayed diagnosis, unequal access to care and limited recognition of the impact these conditions have on daily life.​

That's why Alpha-1 Europe Alliance proudly supports the European Lung Health Group's call for a 𝗘𝘂𝗿𝗼𝗽𝗲𝗮𝗻 𝗟𝘂𝗻𝗴 𝗛𝗲𝗮𝗹𝘁𝗵 𝗣𝗹𝗮𝗻.​

A coordinated European approach can help:​
🫁 Promote prevention and cleaner air.​
🔍 Improve early diagnosis.​
💙 Ensure equitable access to quality care and treatment.​
🤝 Put patients at the centre of respiratory health policies.​

For people living with Alpha-1 Antitrypsin Deficiency ( ) and other respiratory diseases, this is an opportunity to build a healthier future where lung health receives the political attention it deserves.​

Together, we can help Europe keep breathing.​

31/07/2026

A beautiful tribute to Arran Strong. This Sunday, we celebrate his life, his spirit, and his enduring legacy.🌊💙

A Arran Strong, nuestro queridísimo Embajador de la Fundación Lovexair, no solo le definían su alegría, su energía, su resiliencia frente a la enfermedad, su inmensa generosidad o esa capacidad casi mágica de iluminar a quienes se cruzaban en su camino.

Sobre todo, le definía su irresistible y contagiosa pasión por la vida.

Arran nos enseñó que siempre hay una razón para sonreír, para seguir adelante y para vivir con intensidad cada instante. Nos inspiró profundamente y su forma de entender la vida seguirá acompañándonos cada día.

Este próximo domingo 2 de agosto nos reuniremos en Portugal para celebrar su vida, recordar todo lo que nos regaló y dejarnos contagiar, una vez más, por la luz que dejó en todos nosotros.

La familia de Arran, sus amigos y toda la comunidad estarán encantados de recibir cualquier mensaje, recuerdo o dedicatoria que queráis compartir con motivo de este homenaje.

Va por ti, Arran. 💙

Arran Strong

29/07/2026

Today, we remember 𝑨𝒓𝒓𝒂𝒏 with profound sadness.

Diagnosed with Alpha-1 Antitrypsin Deficiency (AATD) at birth, Arran faced health challenges throughout his life with extraordinary courage and resilience. He never let his condition define him. Instead, he pursued his passion for the ocean, becoming a professional surfer and inspiring everyone around him with his strength, determination, joyful spirit, and infectious smile.

Arran showed us that life is not measured by the obstacles we face, but by the courage and joy with which we embrace it. His legacy will continue to inspire the entire Alpha-1 community. 💜

Our heartfelt condolences go to his mother, Shane Fitch - founder of Lovexair Foundation, whose dedication to advancing digital care around the world was inspired by Arran; to his sisters, his son, his friends, and all who had the privilege of knowing and loving him.

𝑅𝑒𝑠𝑡 𝑖𝑛 𝑝𝑒𝑎𝑐𝑒, 𝐴𝑟𝑟𝑎𝑛.
May you forever find the freedom and joy you loved so deeply in the sea. 🌊🕊️

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)

28/07/2026

🇳🇱 Mapping Alpha-1 care resources in the 𝗡𝗲𝘁𝗵𝗲𝗿𝗹𝗮𝗻𝗱𝘀

The Netherlands has a strong integration into European research initiatives for people living with Alpha-1 Antitrypsin Deficiency ( ).

🔹Access to specialised expertise
Specialist care for AATD is primarily coordinated through the reference centre: the Leiden University Medical Center (LUMC), Department of Pulmonology. LUMC serves as the national hub for Alpha-1 care, offering diagnosis, follow-up, and multidisciplinary respiratory management.
🔗 https://www.lumc.nl/afdelingen/longziekten/ziektes-en-aandoeningen/alpha-1-antitrypsine-deficientie-aatd-ook-wel-alpha-1/

🔹Access to treatment
In the Netherlands, augmentation therapy is covered under the basic health insurance scheme, but reimbursement is strictly regulated. It is available only for patients meeting specific clinical criteria (e.g. severe deficiency genotypes and documented progressive lung disease). Treatment approval is based on medical necessity and assessed through the national reference centre.

🔹Registries and European research collaboration
The Netherlands actively participates in the 𝐄𝐀𝐑𝐂𝐎 𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐲 and is also home to the Dutch node of the 𝐀𝐥𝐩𝐡𝐚-𝟏 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐑𝐞𝐠𝐢𝐬𝐭𝐫𝐲 (𝐀𝟏𝐑), hosted by LUMC in Leiden and led by Dr Emily van 't Wout, an Associate Professor of Respiratory Medicine at LUMC. This centre contributes to international research and data collection in AATD under the Department of Pulmonology.

🔹Patient support
For information, guidance, and patient support, individuals can contact the national lung patient organisation Longfonds, which provides education, advocacy, and community support for people living with respiratory diseases, including Alpha-1.
🔗 https://www.longfonds.nl/longziekten/alpha-1

Together, these resources help ensure structured access to specialised care, treatment, and research participation for people living with in the .