Alpha-1 plus

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)

Member of European Parliament Romana Jerković insists that Alpha-1 patients wait too long for diagnosis and treatment, advocating for the prioritization of rare diseases like Alpha-1 in healthcare policies. #Alpha1Awareness

Wrapping Up Alpha-1 Awareness Month with Connection and Positivity This Saturday, we gathered at the Alpha-1 Plus headquarters for a wonderful brunch hosted by our president, Frank Willersinn. It was a perfect way to close out Alpha-1 Awareness Month—sharing stories, exchanging insights, and most importantly, fostering a sense of community. One of the highlights of our discussion was the reminder to focus on what we can do rather than what we cannot. This positive outlook, combined with the power of sharing experiences among patients, plays a crucial role in building resilience and supporting one another. Grateful to everyone who contributed to this inspiring day and to Alpha-1 Awareness Month as a whole. Let’s continue spreading awareness and strength within our community! #Alpha1Awareness #PatientSupport #CommunityStrength #PositiveAttitude #unitedforalpha Alpha-1 Europe Alliance asbl

Member of the European Parliament András Kulja reminds us that Alpha-1 is a serious genetic condition affecting the lungs and liver. Yet, 90% of patients remain undiagnosed! Better recognition and treatment for all Alpha-1 patients are needed across Europe. #Alpha1Awareness

Member of the European Parliament Tilly Metz reminds us that a new EU term means new opportunities to prioritize rare diseases like Alpha-1. Let’s put Alpha-1 patients on the agenda! #Alpha1Awareness

✋ 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

Too many Alpha-1 patients in Europe face barriers to the treatment they need. Member of the European Parliament Tomislav Sokol advocates for better worldwide access and recognition for the Alpha-1 community. Join the movement! #Alpha1Awareness

Member of European Parliament Vytenis Andriukaitis addresses the need for dedicated support and awareness for Alpha-1 patients and calls for improved funding, research, and treatment access across Europe. #Alpha1AwarenessMonth

Member of the European Parliament Katerina Konecna reminds us that rare diseases like Alpha-1 often go unnoticed. Let's join her in advocating for timely care and support for all rare disease patients. #Alpha1Awareness