Alpha-1 Europe Alliance asbl

Do you know the 𝘀𝗸𝗶𝗻-𝗿𝗲𝗹𝗮𝘁𝗲𝗱 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 of 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗔𝗻𝘁𝗶𝘁𝗿𝘆𝗽𝘀𝗶𝗻 𝗗𝗲𝗳𝗶𝗰𝗶𝗲𝗻𝗰𝘆? 🌿 Alpha-1 Antitrypsin Deficiency (Alpha-1) is a genetic condition that can cause lung, liver, and skin disease due to a lack of a protective protein called Alpha-1 Antitrypsin (AAT). #Skin symptoms to watch for include: - Erythematous plaques and nodules on the skin - Nodules that may appear on the legs, arms, trunk, or face - Nodules that may ulcerate, bleed, and leak oily material - Fever Skin disease related to Alpha-1, called panniculitis, can develop when protein breakdown occurs within the skin, leading to the development of plaques and nodules. This condition can be diagnosed through a skin biopsy. If you notice any of these skin changes, it’s important to consult your doctor and get tested for Alpha-1. 🔗More information at: https://lnkd.in/gj3JYTVY #Alpha1Awareness #RareDiseases #SkinHealth #Panniculitis Ern-Skin GlobalSkin - International Alliance of Dermatology Patient Organizations Alpha1 Österreich-Verein 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1 Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa 1 AT ODV 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden 🇩🇰 🇳🇴 🇸🇪 (Denmark, Norden, Sweden) Associação Alfa1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa-1 España 🇪🇸 (Spain) Lovexair Foundation 🇪🇸 (Spain) Alpha 1 Verein Schweiz 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

Do you know the 𝗹𝗶𝘃𝗲𝗿-𝗿𝗲𝗹𝗮𝘁𝗲𝗱 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 of 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗔𝗻𝘁𝗶𝘁𝗿𝘆𝗽𝘀𝗶𝗻 𝗗𝗲𝗳𝗶𝗰𝗶𝗲𝗻𝗰𝘆? 🍃 Alpha-1 Antitrypsin Deficiency, or Alpha-1, is a genetic condition caused by a lack of Alpha-1 Antitrypsin (AAT) in the bloodstream. It can lead to lung, liver, and/or skin disease. Signs of #liver issues related to #Alpha1 may include: - Unexplained liver disease or elevated liver enzymes - Yellowing of the skin or eyes (jaundice) - Swelling of the abdomen (ascites) or legs 👉If you notice any of these symptoms, consult your doctor and ask for an Alpha-1 test. A blood test can measure your AAT levels, but a definitive diagnosis of Alpha-1 can only be confirmed through genetic testing. 🔗More information at: https://lnkd.in/gj3JYTVY #Alpha1Awareness #RareDiseases #LiverHealth #Jaundice European Liver Patients' Association - ELPA EASL | The Home of Hepatology ERN RARE-LIVER Alpha1 Österreich-Verein 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1 Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa 1 AT ODV 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden 🇩🇰 🇳🇴 🇸🇪 (Denmark, Norden, Sweden) Associação Alfa1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa-1 España 🇪🇸 (Spain) Lovexair Foundation 🇪🇸 (Spain) Alpha 1 Verein Schweiz 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK) 

📰 Congratulations to Anabela! 🎉 Her story was featured in Barcelos Popular, a renowned Portuguese newspaper. The article "Barcelense led delegation to Brussels" highlights her impactful participation in Rare Disease Week, hosted by EURORDIS-Rare Diseases Europe, representing both Alpha-1 Europe Alliance asbl and AA1P (Alfa-1 Portugal Association) Anabela shares her personal journey as a mother, recounting the challenges and triumphs before and after her 3-year-old daughter was diagnosed with Alpha-1 Antitrypsin Deficiency (#AATD). The piece also underscores the critical importance of early diagnosis through blood testing and the need for equitable access to care and treatment. Thank you, Anabela, for your advocacy and inspiring testimony! 💪 #RDW24 #Alpha1Awareness #unitedforAlpha 🌐 Alpha1 Österreich-Verein 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1 Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa 1 AT ODV 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden 🇩🇰 🇳🇴 🇸🇪 (Denmark, Norden, Sweden) Associação Alfa1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa-1 España 🇪🇸 (Spain) Lovexair Foundation 🇪🇸 (Spain) Alpha 1 Verein Schweiz 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

"Networks like the one we have in Germany remind me that we are not alone in facing this disease!" Don’t miss this inspiring interview with Marion Wilkens. Thank you European Lung Foundation for supporting our community and raising awareness about #Alpha1! 💪

We are incredibly grateful to Crowell & Moring for their pro bono support and to Pro Publico for connecting us. Your expertise has been vital in helping the Alpha-1 Europe Alliance take shape, advancing our mission to support the Alpha-1 community across Europe. Thank you for making a difference! 🙌 #Alpha1 #RareDiseases #ProBono #Impact

Do you know the 𝗹𝘂𝗻𝗴-𝗿𝗲𝗹𝗮𝘁𝗲𝗱 𝘀𝘆𝗺𝗽𝘁𝗼𝗺𝘀 of 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗔𝗻𝘁𝗶𝘁𝗿𝘆𝗽𝘀𝗶𝗻 𝗗𝗲𝗳𝗶𝗰𝗶𝗲𝗻𝗰𝘆? 🌬️ Alpha-1 Antitrypsin Deficiency, also known as Alpha-1, is a genetic condition caused by a lack of a protein called Alpha-1 Antitrypsin (AAT) in the bloodstream. This condition may result in lung, liver, and/or skin diseases. Common lung-related symptoms include: - Shortness of breath - Wheezing - Chronic bronchitis (long-lasting cough and phlegm) - Recurring chest colds - Reduced exercise tolerance - Year-round allergies - Bronchiectasis ⚠️If you experience any of these symptoms, it's important to talk to your doctor and get tested for Alpha-1. A blood test can measure AAT levels, but a definitive diagnosis can only be confirmed through genetic testing. #Alpha1Awareness #LungHealth #COPD #Bronchiectasis #Asthma Alpha1 Österreich-Verein 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1 Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa 1 AT ODV 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden 🇩🇰 🇳🇴 🇸🇪 (Denmark, Norden, Sweden) Associação Alfa1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa-1 España 🇪🇸 (Spain) Lovexair Foundation 🇪🇸 (Spain) Alpha 1 Verein Schweiz 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

🔍 What is 𝗔𝗹𝗽𝗵𝗮-𝟭? Alpha-1 Antitrypsin Deficiency (AATD), or simply Alpha-1, is a genetic condition that can seriously affect your lungs, liver, and even skin. Here’s what you need to know about this rare condition: 🧬 Cause: It’s caused by a lack of a protective protein called Alpha-1 Antitrypsin (AAT), made mostly in the liver. Without enough AAT, your lungs become vulnerable to damage from infections and irritants. 📉 Impact: Lungs: Increased risk of diseases like emphysema. Liver: Abnormal AAT buildup can harm the liver, leading to disease. Skin: In rare cases, it can cause panniculitis, a painful skin condition. 📋 Diagnosis: Simple blood tests can measure AAT levels and detect gene mutations. Early diagnosis is key to managing Alpha-1 effectively! 💡 Take action: Spread the word and help raise awareness. Knowledge saves lives. #Alpha1Awareness #RareDisease Alpha1 Österreich-Verein 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1 Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa 1 AT ODV 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden 🇩🇰 🇳🇴 🇸🇪 (Denmark, Norden, Sweden) Associação Alfa1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa-1 España 🇪🇸 (Spain) Lovexair Foundation 🇪🇸 (Spain) Alpha 1 Verein Schweiz 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

✋ Advocacy in action: Representing the Alpha-1 Community at Rare Disease Week! We are thrilled to have Anabela Lemos 🇵🇹 representing the Alpha-1 community at the #RDW24 in Brussels! This gathering, organized by EURORDIS-Rare Diseases Europe, is a key platform to amplify the voices of rare disease advocates and shape EU policy. 🗨️ Rare Disease Week equips advocates with the skills and networks needed to share impactful stories and propose actionable solutions for over 30M people across Europe. Key topics discussed include: ✔️ Equity in treatment ✔️ Access to diagnosis ✔️ Financial and mental health support for patients and caregivers ✔️ Priorities like the EU4Health budget and policies for orphan drugs "We are proud to collaborate on the Rare Disease Action Plan for Europe and champion the rights of those living with rare conditions". 💪✨ 📷 Tilly Metz Adam Jarubas Gil Mancini Emanuela Politi-Cuminetti #RDW24 #RareDiseases #Advocacy #Alpha1 #EUHealth #PatientRights #AA1P Associação Alfa1 de Portugal

🌍 Today is 𝗪𝗼𝗿𝗹𝗱 𝗖𝗢𝗣𝗗 𝗗𝗮𝘆, a time to amplify the voices of those with this condition. For the Alpha-1 community, it’s also a vital opportunity to highlight the importance of early diagnosis. 🧬Did you know? Alpha-1 Antitrypsin Deficiency was the first genetic risk factor identified for Chronic Obstructive Pulmonary Disease. Many COPD cases are linked to Alpha-1, yet underdiagnosis remains a major challenge for patients. The European Respiratory Society recommends testing all patients diagnosed with COPD or adult-onset asthma for AATD. Every COPD patient should be tested for Alpha-1 at least once in their lifetime. ❓ Have you been tested? If you have #COPD, talk to your doctor to ensure you’ve had the Alpha-1 test. Early detection can save lives. #Alpha1 #AATD #WorldCOPDDay #EarlyDiagnosis 🤜🤛 Global Initiative for Chronic Obstructive Lung Disease Alpha1 Österreich-Verein 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1 Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa 1 AT ODV 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden 🇩🇰 🇳🇴 🇸🇪 (Denmark, Norden, Sweden) Associação Alfa1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa-1 España 🇪🇸 (Spain) Lovexair Foundation 🇪🇸 (Spain) Alpha 1 Verein Schweiz 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK)

💫 What an inspiring gathering at our "𝗔𝗰𝗵𝗶𝗲𝘃𝗶𝗻𝗴 𝗘𝗾𝘂𝗶𝘁𝘆 𝗶𝗻 𝗔𝗰𝗰𝗲𝘀𝘀 𝘁𝗼 𝗖𝗮𝗿𝗲 𝗮𝗻𝗱 𝗧𝗿𝗲𝗮𝘁𝗺𝗲𝗻𝘁 𝗳𝗼𝗿 𝘁𝗵𝗲 𝗔𝗹𝗽𝗵𝗮-𝟭 𝗖𝗼𝗺𝗺𝘂𝗻𝗶𝘁𝘆 𝗶𝗻 𝗘𝘂𝗿𝗼𝗽𝗲: 𝗕𝘂𝗶𝗹𝗱𝗶𝗻𝗴 𝗮 𝗥𝗼𝗮𝗱𝗺𝗮𝗽 𝘁𝗼 𝟮𝟬𝟯𝟬" event in #Brussels! The day was filled with impactful discussions and collaborative efforts aimed at shaping the future of diagnosis, care, and treatment access for the #Alpha1 community in #Europe. 💡 We kicked off with a keynote presentation by Valentina Bottarelli from EURORDIS-Rare Diseases Europe who highlighted the essential role of patient involvement in regulatory discussions and the importance of including patient voices in policy-making. 🌐 A key highlight was the overview of the #access landscape across Europe, led by our Board member, Frank Willersinn which shed light on the disparities and challenges facing the Alpha-1 community. 🗣️ Two insightful panels followed, exploring major barriers to access across Europe and addressing the unmet needs of individuals with Alpha-1, with valuable insights from experts and patient advocates. Special thanks to the Alpha-1 experts and panelists for their significant contributions: 𝗗𝗿 Marc Miravitlles, 𝗣𝗿𝗼𝗳 𝗗𝗮𝘃𝗶𝗱 𝗣𝗮𝗿𝗿, 𝗗𝗿 Ilaria Ferrarotti, 𝗣𝗿𝗼𝗳 Henedina Antunes, MD, PhD, Knut Skaar, Ron Ewals, Fernanda A., and Karen O'Hara. 🛠️ Breakout sessions concluded the day, with a focus on building a #Roadmap to overcome inequities in access to care and treatment, bringing everyone together to craft actionable solutions for the Alpha-1 community. The energy and commitment in the room were remarkable, reinforcing the power of community-driven action to achieve equitable access to care and treatment for all. 💪 A heartfelt thank you to our speakers, panelists, and participants for their dedication to driving positive change. Together, we are laying the groundwork for a brighter, more equitable future for the Alpha-1 community. 💙 🔔 Stay tuned for updates on the outcomes of this important gathering! https://lnkd.in/ddnv6KZG #Alpha1 #HealthcareEquity #PatientAdvocacy #AccessToCare #CommunityBuilding #Roadmap2030 🤝 Alpha1 Österreich-Verein 🇦🇹 (Austria) Alpha-1 plus 🇧🇪 (Belgium) Alpha-1 Deutschland 🇩🇪 (Germany) Alpha-1 Foundation Ireland 🇮🇪 (Ireland) Associazione Nazionale Alfa 1 AT ODV 🇮🇹 (Italy) Longfonds 🇳🇱 (Netherlands) Alfa-1 Norden 🇩🇰 🇳🇴 🇸🇪 (Denmark, Norden, Sweden) Associação Alfa1 de Portugal 🇵🇹 (Portugal) Asociatia Alfasim 🇷🇴 (Romania) Alfa-1 España 🇪🇸 (Spain) Lovexair Foundation 🇪🇸 (Spain) Alpha 1 Verein Schweiz 🇨🇭 (Switzerland) Alpha-1 UK 🇬🇧 (UK) 🙌 Grifols CSL Takeda KAMADA and Mereo BioPharma