Alpha-1 Europe Alliance asbl

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 .

25/07/2026

𝗛𝗼𝘄 𝗶𝘀 𝗹𝗶𝘃𝗲𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝘁𝗿𝗲𝗮𝘁𝗲𝗱 𝗶𝗻 𝗔𝗹𝗽𝗵𝗮-𝟭?💛

At present, there is no approved treatment that specifically targets related liver disease. However, research and clinical trials are ongoing to better understand and treat the condition.​

For some people with advanced liver disease, a liver transplant may be the only treatment option. Transplantation can restore normal liver function and also leads to normal production of alpha-1 antitrypsin in the body.​

🟡While there is currently no cure, ongoing monitoring and specialist care are essential to manage the disease and support long-term health.​

If you or your child have , talk to your doctor about your health and follow-up plan.🩺

24/07/2026

💡𝗛𝗼𝘄 𝗶𝘀 𝗹𝗶𝘃𝗲𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗱𝗲𝘁𝗲𝗰𝘁𝗲𝗱 𝗶𝗻 𝗔𝗹𝗽𝗵𝗮-𝟭?

Liver disease in Alpha-1 Antitrypsin Deficiency can develop silently, and blood tests may be normal even when disease is present. ​

This is why diagnosis and monitoring require a combination of tests, not blood tests alone. ​

Key tests for liver health in Alpha‑1:​

1️⃣ Routine blood tests: Regular check of liver enzymes: ALT, AST, GGT, ALP, and bilirubin. These help spot early signs of liver stress.​
2️⃣ Fibrosis blood scores: A simple blood test can estimate liver scarring using APRI or FIB‑4. These scores help decide whether further testing is needed.​
3️⃣ Liver elastography (VCTE): A quick, painless scan that measures liver stiffness to detect fibrosis. This is the preferred test for assessing liver scarring.​
4️⃣ Liver ultrasound: Used to check liver structure and, in people with cirrhosis, to monitor for liver cancer (HCC). It does not measure fibrosis, but it’s essential for long‑term follow‑up.​

Liver biopsy — only when necessary: Not a routine test. Used only when results are unclear, when another liver disease is suspected, or for clinical trial evaluation.​

⚠️Factors that can worsen liver damage:​
• Alcohol consumption​
• Obesity and metabolic syndrome​
• Diabetes​
• Viral hepatitis​
• Certain medications​

Because liver disease in AATD can progress quietly, regular monitoring is essential—even if you feel well.​

🟡 Early detection helps protect long-term liver health.​

23/07/2026

𝗔𝗹𝗽𝗵𝗮-𝟭 & 𝗹𝗶𝘃𝗲𝗿 𝗱𝗶𝘀𝗲𝗮𝘀𝗲 𝗶𝗻 𝗰𝗵𝗶𝗹𝗱𝗿𝗲𝗻👶👧​

Alpha-1 Antitrypsin Deficiency is one of the most common genetic causes of disease in children. It can appear at any time during infancy or childhood.​ In many children, liver involvement is mild and improves over time. However, around 2–3% may develop severe liver disease that requires specialised care or even liver transplantation.​

🟡Early liver disease in is often silent, but possible signs include:​
• Jaundice (the skin and/or eyes turning yellow)​
• Poor weight gain or growth delay​
• Enlarged liver or spleen​
• Fatigue or reduced appetite​
• Abdominal swelling
• Pale stools or dark urine​

🩺Monitoring is essential and may include:​
✓ Regular liver blood tests​
✓ Liver ultrasound​
✓ Liver elastography​
✓ Growth and nutritional assessment​
✓ Specialist follow-up with paediatric hepatology​
✓ Additional fibrosis assessment when indicated​

🔎 Most children with AATD do not develop severe , but early and ongoing monitoring helps ensure timely detection and care.​

Early awareness and regular follow-up help protect long-term

22/07/2026

Living with ? Don’t forget about your liver.
​
When people think about Alpha-1 Antitrypsin Deficiency, they often think about the . But Alpha-1 can also affect the , 𝑠𝑜𝑚𝑒𝑡𝑖𝑚𝑒𝑠 𝑤𝑖𝑡ℎ𝑜𝑢𝑡 𝑐𝑎𝑢𝑠𝑖𝑛𝑔 𝑛𝑜𝑡𝑖𝑐𝑒𝑎𝑏𝑙𝑒 𝑠𝑦𝑚𝑝𝑡𝑜𝑚𝑠.​

Liver disease in can affect people of any age — including newborns, children, and adults.​
Individuals with AATD have an increased risk of liver disease, including fibrosis, cirrhosis, and, in some cases, liver cancer. Because liver disease can develop silently, 𝗿𝗲𝗴𝘂𝗹𝗮𝗿 𝗺𝗼𝗻𝗶𝘁𝗼𝗿𝗶𝗻𝗴 𝗶𝘀 𝗶𝗺𝗽𝗼𝗿𝘁𝗮𝗻𝘁—𝗲𝘃𝗲𝗻 𝗶𝗳 𝘆𝗼𝘂 𝗳𝗲𝗲𝗹 𝘄𝗲𝗹𝗹. ​

🟡Know the signs:​
• Persistent fatigue​
• Loss of appetite​
• Unexplained weight loss​
• Swelling of the abdomen or legs​
• Jaundice (yellowing of the skin or eyes)​
• Itching​
• Pain or discomfort in the upper right abdomen​
• Dark urine or pale stools​

⚠️Protect your liver. Make liver health part of your Alpha-1 care.​

Talk to your doctor about liver monitoring. Ongoing care may include: specific blood tests, ultrasound or elastography, maintaining a healthy weight, limiting alcohol consumption, managing fatty liver disease and diabetes.

📣Please share this post to help others learn about this often overlooked condition.

21/07/2026

𝑻𝒉𝒆 𝒄𝒐𝒏𝒏𝒆𝒄𝒕𝒊𝒐𝒏 𝒃𝒆𝒕𝒘𝒆𝒆𝒏 𝑨𝑨𝑻𝑫 𝒂𝒏𝒅 𝒍𝒊𝒗𝒆𝒓 𝒅𝒊𝒔𝒆𝒂𝒔𝒆🧬​

plays a vital role in keeping our body healthy: it cleans our blood, helps fight infections, and stores important nutrients that we need to function.​

In Alpha-1 Antitrypsin Deficiency, the liver is also where the condition begins.​

can lead to a build-up of a faulty protein inside the liver. Over time, this may affect how well the liver works. Not everyone with AATD will develop liver problems, but it is one of the potential complications of the condition, and its impact can vary from person to person.​

🟡Liver disease in AATD can sometimes go unnoticed for a long time — especially in the early stages when there are no clear symptoms.​

Signs of liver problems can include:​
• Yellowing of the eyes or skin (jaundice)​
• Pain and/or swelling in the abdomen or legs​
• Itchy skin​
• Diarrhoea​
• Feeling weak and tired​
• Cirrhosis​

👉If you or your child have unexplained liver problems, consider testing for AATD.​
👉If you or your child are living with AATD, regular liver checks are important—even if there are no symptoms.​

💙 Awareness matters. Knowing the signs and the connection between AATD and liver health can help with earlier recognition and better care.
🔗https://alpha1europe.org/about-the-condition/