Alpha-1 Foundation Ireland

Dedicated to improving the lives of people with Alpha-1. Find us at or on Facebook (@alpha1ireland). CHY22304. #Alpha1Awareness

[Alpha-1 Foundation Ireland @Alpha1_Ireland]

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 https://t.co/tKVlSMq3IN and please like and RT #seeCOPDthinkAlpha1

[Alpha-1 Europe Alliance asbl @alpha1europe]

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

[Alpha-1 Europe Alliance asbl @alpha1europe]

🇪🇺 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: https://t.co/L1Wiy206ie
#RareDiseases #PatientAdvocacy #AATD #EUHealth

[Alpha-1 Europe Alliance asbl @alpha1europe]

🎉 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

[Alpha-1 Foundation Ireland @Alpha1_Ireland]

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

[EURORDIS-Rare Diseases Europe @eurordis]

📝 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: https://t.co/7bJTaPnAYu

Your answers will help shape stronger support policies.
Available in 25 languages.💙

[Alpha-1 Europe Alliance asbl @alpha1europe]

❓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

[Alpha-1 Foundation Ireland @Alpha1_Ireland]

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 https://t.co/LLsFNrLjxQ

[Alpha-1 Europe Alliance asbl @alpha1europe]

📣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

[Miriam Shinners @MiriamShinners]

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

[Alpha-1 Foundation Ireland @Alpha1_Ireland]

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.

[RCSI @RCSI_Irl]

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 ⬇️ https://t.co/1sbiDBi8jZ

[Alpha-1 Europe Alliance asbl @alpha1europe]

🚭 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

[HSE QUIT Team @HSEQuitTeam]

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: https://t.co/SFoptawX6T

#QuitVaping #TakeBackControl #QuittingIsWinning

[Alpha-1 Europe Alliance asbl @alpha1europe]

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

[Alpha-1 Foundation Ireland @Alpha1_Ireland]

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.
https://t.co/LPK44mD1lv

[Alpha-1 Foundation @AlphaFriend]

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: https://t.co/JnCJjGwHzw

[Alpha-1 Europe Alliance asbl @alpha1europe]

🙋‍♀️ 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:
🔗 https://t.co/PrrA7Js76y

#TheVikingLegacy #UnitedForAlpha1 #Alpha1Europe

[Alpha-1 Europe Alliance asbl @alpha1europe]

🛡️ 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? 👉 https://t.co/AUX7zMcyfL
#TheVikingLegacy #UnitedForAlpha1 #LiverHealth #RareDiseases #Alpha1

[Alpha-1 Europe Alliance asbl @alpha1europe]

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

[Rare Diseases Ireland @RareDiseasesIE]

Share your experiences of the challenges faced by a family when a child is diagnosed with a #RareDisease
https://t.co/XoKTBWEaoS
Help us to understand what matters most for people living with rare diseases.

[Alpha-1 Europe Alliance asbl @alpha1europe]

🏹 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: https://t.co/PrrA7Js76y

#TheVikingLegacy #UnitedForAlpha1 #LungHealth #Alpha1Awareness #AATD