Dedicated to improving the lives of people with Alpha-1. Find us at https://nitter.cf/t.co/uHMc9iOsAr or on Facebook (@alpha1ireland). CHY22304. #Alpha1Awareness
Dublin, Ireland
Joined April 2017
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Ireland has one of the highest rates of #Alpha1 antitrypsin deficiency in the world. Serious illness can be prevented with early diagnosis and avoidance of smoking. To learn more watch tiny.cc/k8aggz and please like and RT #seeCOPDthinkAlpha1
Alpha-1 Foundation Ireland retweeted
Fernanda Aspilche Ferro, our President and Alpha-1 patient advocate, shares her story as an AATD patient diagnosed in 2019 — still without access to treatment in Belgium, where she lives.
Her experience highlights the urgent need for policymakers and decision-makers to address the inequalities faced by Alpha-1 patients across Europe.
#AATD #Alpha1 #RareDiseases #AwarenessMonth #UnitedForAlpha1 #EuropeanParliament #PatientAdvocacy #Equity
ALT https://alpha1europe.org/about-us/#fernanda-aspilche-ferro
Alpha-1 Foundation Ireland retweeted
🇪🇺 During #Alpha1 Awareness Month, experts, policymakers & patients united at the European Parliament to advance equitable care for #Alpha1. Thanks to MEP @OChastel for hosting and @AlphaFriend for inviting us!
📢 Call To Action: alpha1europe.org/roadmap-203…
#RareDiseases #PatientAdvocacy #AATD #EUHealth
Alpha-1 Foundation Ireland retweeted
🎉 Celebrating 2 years of the Alpha-1 Europe Alliance!
In just two years we’ve:
✅ Built strong foundations
✅ Hosted our 1st Brussels event
✅ Raised Alpha-1 awareness across Europe
💛 With 13 orgs in 14 countries, we’re driving change for 4,500+ people with Alpha-1. The future is brighter united! #AATD #Alpha1Europe #UnitedforAlpha1
On World Lung Day Anne Marie O'Dowd and Laith Bedri of @Alpha1_Ireland joined the Irish Lung Health Alliance to talk to politicians about lung health and #Alpha1
Enthusiastic support from Jerry Buttimer TD and also Orla Veale from @irishthoracicS
#Alpha1awareness
Alpha-1 Foundation Ireland retweeted
📝 The Rare Barometer programme is back! The survey is open until 16 Nov to everyone living with a rare or undiagnosed condition, and their families.
👉 Our survey: tiny.cc/RB-MH
Your answers will help shape stronger support policies.
Available in 25 languages.💙
ALT "Your voice matters, rare Barometer Survey. Together, we will turn your experience into powerful data to drive positive change and improve support for the rare disease community" Adult bending over on a sandy beach holding a child upside down playfully near the water at sunset.
Alpha-1 Foundation Ireland retweeted
❓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
ALT Source: https://europeanlung.org/en/information-hub/lung-conditions/alpha-1-antitrypsin-deficiency
As a member of the Future of Registries Taskforce (FoRT), @Alpha1_Ireland helped shape a new report “Sustaining Patient Registries in Ireland”. More than just collections of data, registries are vital for delivering better healthcare. More at tinyurl.com/4s7s2dbf
Alpha-1 Foundation Ireland retweeted
📣The Alpha-1 Europe Alliance just held its 𝟯𝗿𝗱 𝗔𝗻𝗻𝘂𝗮𝗹 𝗔𝘀𝘀𝗲𝗺𝗯𝗹𝘆 - a moment to reflect, connect, and look ahead.
Together, we reviewed 2024 activities, approved finance reports, and adopted our 2025 roadmap — renewing our united commitment to the Alpha-1 community. 💪🚀
#Alpha1 #AATD #Alpha1Europe #PatientAdvocacy #AnnualAssembly #StrongerTogether
Alpha-1 Foundation Ireland retweeted
Detecting reduced levels of the Alpha -1 protein is performed in Medical Labs all over the country, robust reflexing pathways for typing means samples reach the foundation to detect these patients @ACSLM1
The 500th person with severe Alpha-1 caused by the ZZ genotype has been diagnosed in Ireland. The national detection programme for Alpha-1, funded by @HSELive, began in 2004 and is the only programme of its kind in the world. Thanks to @RCSI_Irl & @AlphaFriend for their support.
The 500th person with severe Alpha-1 caused by the ZZ genotype has been diagnosed in Ireland. The national detection programme for Alpha-1, funded by @HSELive, began in 2004 and is the only programme of its kind in the world. Thanks to @RCSI_Irl & @AlphaFriend for their support.
More than 500 people in Ireland have been diagnosed with the severe form of Alpha-1 Antitrypsin Deficiency (AATD), thanks to an RCSI screening programme @Beaumont_Dublin.
Early diagnosis can be transformative in improving patient outcomes.
Read more ⬇️ rcsi.com/impact/details/2025…
Alpha-1 Foundation Ireland retweeted
🚭 A1EA supports 𝐖𝐨𝐫𝐥𝐝 𝐍𝐨 𝐓𝐨𝐛𝐚𝐜𝐜𝐨 𝐃𝐚𝐲 𝟐𝟎𝟐𝟓! 🚭
This year, @WHO is exposing the harmful tactics of the tobacco and nicotine industries, which continue to target young people with appealing flavors, sleek designs, and deceptive marketing.
🔎 Did you know?
📌 Flavored products mask the harshness of tobacco, making it easier to start and harder to quit.
📌 Sleek packaging and digital ads glamorize nicotine use, especially among youth.
📌 In Europe, e-cigarette use among adolescents (12.5%) is far higher than among adults (2%)—a worrying trend!
We stand with WHO and public health advocates in calling for stronger policies to ban flavored nicotine products, regulate advertising, and protect youth from addiction. 🚫
📢 Join us in raising awareness! Let’s work together for a future free from tobacco and nicotine addiction.
#WorldNoTobaccoDay #WNTD2025 #TobaccoExposed #LungHealth
ALT https://www.who.int/campaigns/world-no-tobacco-day/2025
Alpha-1 Foundation Ireland retweeted
Vaping can harm your heart, lungs, and overall organ function. Avoid it as a way to quit smoking. The safest and most effective way to stop is by seeking support from a stop smoking advisor.
Learn more about quitting vaping at: pulse.ly/fnvi1xxk9o
#QuitVaping #TakeBackControl #QuittingIsWinning
Alpha-1 Foundation Ireland retweeted
Could AATD trace back to our 𝑽𝒊𝒌𝒊𝒏𝒈 𝒓𝒐𝒐𝒕𝒔? 🛡️
In AATD, abnormal proteins can damage the liver — even in infants. ⚠️Early signs may include: jaundice, poor growth, swelling, diarrhoea.
Timely detection of hepatic diseases is essential and possible with a simple blood test.
#TheVikingLegacy #UnitedForAlpha1 #AATD #LiverHealth #Alpha1Europe
ALT The Viking Legacy: https://www.alpha1awarenessday.org/
At the @atscommunity conference in San Francisco this week, there was an inspiring presentation by Len Geiger about his diagnosis of #AATD at the age of 35. By sharing his story, Len raise #Alpha1Awareness among the thousands of respiratory HCPs present.
tinyurl.com/msbbbsee
Alpha-1 Foundation Ireland retweeted
From scientific discovery to the therapies of tomorrow—clinical trials move us forward. This Clinical Trials Day 🔬, find out how research is transforming the future for the Alpha-1 community: alpha1.org/clinical-trials-1…
Alpha-1 Foundation Ireland retweeted
🙋♀️ Raise your hand if you think you know what the Vikings left behind as a legacy...
We’re pretty sure there’s at least one fact that will surprise you. And trust us—the last one is something everyone should know. 🛡️
👉 Discover the surprising connection between Viking history and Alpha-1:
🔗 alpha1awarenessday.org/
#TheVikingLegacy #UnitedForAlpha1 #Alpha1Europe
Alpha-1 Foundation Ireland retweeted
🛡️ Did you know Alpha-1 Antitrypsin Deficiency (AATD) might trace back to our #Viking heritage?
When AAT protein misfolds, it can harm the liver. Symptoms in adults may include:
⚠️ Jaundice
⚠️ Swelling/pain
⚠️ Itching
⚠️ Fatigue
A simple blood test can help.
🧬 Could it be Alpha-1? 👉 alpha1awarenessday.org
#TheVikingLegacy #UnitedForAlpha1 #LiverHealth #RareDiseases #Alpha1
ALT Find our more 🔗 https://www.alpha1awarenessday.org/
Alpha-1 Foundation Ireland retweeted
Is it asthma or 𝑠𝑜𝑚𝑒𝑡ℎ𝑖𝑛𝑔 𝑚𝑜𝑟𝑒? 🤔
#Asthma and #Alpha1 (#AATD) share symptoms like wheezing & shortness of breath — but missing an Alpha-1 diagnosis can lead to serious lung damage.
🩸A simple blood test can help. Ask your doctor.
✅The right diagnosis = the right treatment.
#WorldAsthmaDay #LungHealth #Alpha1Awareness
ALT About AATD: https://alpha1europe.org/about-the-condition/
Alpha-1 Foundation Ireland retweeted
Share your experiences of the challenges faced by a family when a child is diagnosed with a #RareDisease
tinyurl.com/bdhwd2az
Help us to understand what matters most for people living with rare diseases.
Caring for a child with a #RareDisease comes with #financial, #social, and #emotional challenges. We want to understand your experience to create positive change.
Share your voice!
🎥 Watch short video shorturl.at/3zmru
👉Take part in the SURVEY tinyurl.com/bdhwd2az
Alpha-1 Foundation Ireland retweeted
🏹 Could #Alpha1AntitrypsinDeficiency (AATD) be part of your 𝑽𝒊𝒌𝒊𝒏𝒈 𝒉𝒆𝒓𝒊𝒕𝒂𝒈𝒆?
This rare genetic condition affects lungs & liver — and often goes undiagnosed.
✅ A simple blood test can detect it early.
🛡️ Learn more: alpha1awarenessday.org/
#TheVikingLegacy #UnitedForAlpha1 #LungHealth #Alpha1Awareness #AATD
ALT The invasion that still lives in us: https://www.alpha1awarenessday.org/
