Alpha-1 UK

🦓Today is Rare Disease Day 💜 People living with Alpha-1 Antitrypsin Deficiency deserve fair access to diagnosis, treatment and support. Rare should never mean forgotten. Find out more: alpha1.org.uk #RareDiseaseDay #Alpha1 #ShareYourColours #HealthEquity

Happy New Year from Alpha-1 UK - To our Alpha-1 community across the UK and beyond. Your voices, stories, and support continue to drive awareness, improve understanding, and help shape better care for people living with Alpha-1. We wish you all a happy and healthy 2026.

We want to say a thank you to everyone who has been part of the A1UK community this year. Your passion and belief in what we do has helped us continue raising awareness, supporting families, and championing better care for those living with Alpha-1. #Alpha1UK #ThankYou

🚨 We’ve launched our new look + website! 💻✨ Just in time for #Alpha1AwarenessMonth, our updated site makes it easier to learn about Alpha-1, find support, and get involved. 🔗 Check it out: alpha1.org.uk #Alpha1UK #AATD #RareDisease #WebsiteLaunch #Alpha1Awareness

💜Alpha-1 Awareness Month – we’re walking, jogging or running to support those living with Alpha-1 Antitrypsin Deficiency (AATD). 🏃‍♀️ Set a goal 💻 Create a JustGiving page 📸 Share your journey & tag @Alpha1UK 🌍 Raise awareness + vital funds🔗 justgiving.com/campaign/walkf…

💜Alpha‑1 Awareness Month! AATD is a rare genetic condition that can cause serious lung and liver disease. Help us shine a light on Alpha‑1 – share our posts, talk about the signs, and help us reach more people. 🧬 #Alpha1Awareness #RareDisease #Alpha1UK #WhatIsAlpha1 #AATD

🫁 New guidance for better bronchiectasis care Join our free, patient-friendly webinar on 8 November to learn what the new European bronchiectasis guidelines mean for you and how they can help improve communication for healthcare teams. Register here: europeanlung.org/en/get-involve…

Get the latest updates for COPD Care in just a few weeks! This year's GOLD Conference will highlight a newly revised chapter on exacerbation management covering: ✅ New guidance on quantifying exacerbation risk. ✅ Information on how to assess the appropriate place of management during an exacerbation. ✅ What confounders and contributors to consider in patients with exacerbation symptoms. Hear directly from the experts and learn the latest evidence-based guidance for managing and treating COPD to enhance patient outcomes at this year’s GOLD International COPD Conference. November 12–13 | Philadelphia Marriott Downtown. Register today: bit.ly/3FDHJ99 #GOLDCOPD2025

🚨New resource to support people using inhalers or nebulisers. The new Nebuliser and Inhaler Guide helps adults understand their devices and choose what works best for them, developed with patients and professionals. Learn more: europeanlung.org/en/information…

Proud to join the first training of the European Respiratory Patient Academy in #Prague! 💪 45 patient advocates from across #Europe are coming together to strengthen our advocacy skills and shape the future of respiratory health. Co-created by @EFA_Patients

💜Exciting news coming soon! As we head into #Alpha1AwarenessMonth, we’ve been busy giving our online home a fresh new look 👀 A new Alpha-1 UK website is on the way — with easier access to info, news & clinical trials. Stay tuned! #Alpha1UK #AATD #RareDisease

🌍 Europe needs more plasma! Every day, 300,000 patients rely on plasma-derived medicines to survive — yet Europe faces a 5.6M litres shortfall & depends on US plasma. Demand is rising, supply is fragile. 💛 Plasma saves lives — Europe must act now. #IPAW2025 #EuropeNeedsPlasma #PDMPs

❓How 𝐀𝐥𝐩𝐡𝐚-𝟏 is inherited? We all inherit two copies of the SERPINA1 gene (one from each parent): - MM = Normal AAT levels - MZ/MS = Carriers. Usually asymptomatic but may have an increased risk of lung or liver disease if exposed to factors like smoking or heavy alcohol use. - ZZ/SZ = AATD related disease 📢 Alpha-1 isn’t rare — it’s underdiagnosed. #Alpha1 #AATD #Genetics #EARCO #RareDiseaseAwareness

🏔️ “Hi all! Happy to share I reached the summit this morning at 8am EAT after starting our ascent at 11:30pm the evening before.” Our friend in the #Alpha1 journey, an MZ carrier who lost her mother to Alpha-1 this year, made it to Kilimanjaro’s peak! 💚Inspiring! #Alpha1Europe #Alpha1Deutschland #UnitedforAlpha1 #AATD #StrongerTogether #Kilimanjaro

🌍💙 Today is #WorldLungDay! Everyone deserves healthy lungs. Join us in taking action! #BreatheCleanAir #BeSmokeFree #TakeTheActiveOption #Vaccinate #FightClimateChange #EatWel

🌍💨 Today we join the world in #RacingForAir on the International Day of Clean Air for Blue Skies. For people with #Alpha1, polluted air accelerates disease + impacts life quality. 99% of us breathe polluted air—every breath matters. Let’s act for cleaner skies + healthier futures. 🫁 #RacingForAir #CleanAirDay #BlueSkies #Alpha1 #AATD

🫁🌍 On #WorldLungDay we stand with 250+ partners for healthier lungs. For people with Alpha-1 (#AATD), protecting lung health is vital. Breathe clean air, be smoke-free, stay active, vaccinate & eat well. 💛 Prevention & timely care can make all the difference. #Alpha1 #HealthyLungs #HealthyLives

🛡️ Did you know Alpha-1 Antitrypsin Deficiency (AATD) might trace back to our #Viking heritage? Symptoms in adults may include: Jaundice , Itching, Fatigue A simple blood test can help. alpha1awarenessday.org #TheVikingLegacy #UnitedForAlpha1 #LiverHealth #RareDiseases #Alpha1

📢 Join the next UKODTRN public webinar. 28th May 6-7pm Researchers want to find out whether an exercise & motivation programme could help to improve the quality of life in people who have a liver transplant. Come along to find out what it’s all about, and ask any questions you might have. Register: ukodtrn.org/event/nihr-btr…