Our mission is to develop a collaborative global network of Alpha-1 organisations and patients to increase awareness, detection and access to care.
Coral Gables, FL.
Joined March 2015
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Dr. Frank Willersinn is now providing successful examples of advocacy that @alpha1bel has taken in Belgium!
To join, click here: ow.ly/NfoF50J3Ons
Join us at 14:00 CET/8 AM ET for the Alpha-1 Global Webinar on Advocacy! The webinar will take the lessons learned from patient advocacy on successful efforts and present additional pathways to strive for change.
To register, click here: ow.ly/MHUA50J3Ont
Join us on 10 May 2022 for the Alpha-1 Global Webinar on Advocacy! The webinar will take the lessons learned from patient advocacy on successful efforts and present additional pathways to strive for change.
To register, click here: us02web.zoom.us/webinar/regi…
Alpha-1 Global retweeted
From June 8 - 11, 2022, we invite everyone to join us for the first ever Hybrid Alpha-1 National Conference featuring educational programs given by national experts and leaders in the Alpha-1 field. To view the #A1NC22 agenda or register, click here: ow.ly/F3fp50IXqBN
Alpha-1 Global retweeted
Check out the new article on #MZ #Alpha1 in @ATSBlueEditor this month. Part of a Patient Education Series it is co-authored by Gerry Finnerty an Irish Alpha to improve readability for all. #PPI #Alpha1Awareness
Please like and RT. Read for free at bit.ly/35ITB8s
Today is European Alpha-1 Awareness Day! The European Commission and national governments have done much to improve conditions for rare disease patients. We can do more!
Awareness of Alpha-1 Antitrypsin Deficiency remains low, causing many issues such as under diagnosis or often misdiagnosis. You can find more information on the condition through this infographic: ow.ly/bHMg50IR7VJ.
The European Reference Networks (ERNs) can work to overcome this by sharing knowledge cross-border and improving diagnosis and treatment. Improved access to treatment and a more holistic approach can also improve patient outcomes. #Alpha1Awareness #EuropeanAlpha1AwarenessDay
Alpha-1 Global retweeted
Hoy es el día.
El día en el que pedimos:
➕ Investigación.
➕ Diagnóstico.
➕ Especialización.
➕ Concienciación.
➕ Formación del paciente.
#DiaEuropeoAlfa1 #EUAlpha1AwarenessDay
@FEDER_ONG @RarasReales @NoInvisibles
Thank you @iwiseler and @mmatias_ for co-hosting the Improving Care for Alpha-1 Patients webinar again this year and for recognizing the needs of the Alpha-1 community! #Alpha1Awareness
Thank you to @Alpha1_Global for inviting me to co-host this interesting webinar on #Alpha1Awareness Day. Each and everyone of us has a role to play in strengthening Europe’s response to #rarediseases.
Alpha-1 Global retweeted
Thank you to @Alpha1_Global for inviting me to co-host this interesting webinar on #Alpha1Awareness Day. Each and everyone of us has a role to play in strengthening Europe’s response to #rarediseases.
Dr. Frank Willersinn and Fernanda Aspliche of Alpha-1 Plus Belgium are now discussing the successes and challenges of patient advocacy during the Improving Care for Alpha-1 Patients webinar. @alpha1bel #Alpha1Awareness
Prof. Joanna Chorostowska-Wynimko, Cross-Border Care Committee of ERN-Lung, is now giving her presentation on Alpha-1 and the European Reference Networks during the Improving Care for Patients Webinar. #Alpha1Awareness
Professor Gerry McElvaney, of Beaumont Hospital and the Royal College of Surgeons in Ireland, is now presenting on Alpha-1: treatment, diagnosis and improving quality of life, during the Improving Care for Alpha-1 Patients webinar. #Alpha1Awareness
Scott Santarella, President and CEO of the Alpha-1 Foundation, is presenting on Alpha-1 Global, the Foundation's global program, and efforts being made to improve the lives of Alphas globally. #Alpha1Awareness
The Improving Care for Alpha-1 Patients webinar has begun! We are joined today by Members of European Parliament @iwiseler and @mmatias_! The presentations will commence following a greeting from our co-hosts #Alpha1Awareness
To join, register here: bit.ly/3jF63JG
Alpha-1 Global retweeted
#Alpha1Awareness J’ai le plaisir de co-organiser ce webinaire sur le rôle de l’UE dans l’amélioration des soins et des traitements des patients ainsi que sur le dépistage précoce #Alpha1 👉 Rejoignez la discussion cet après-midi à 14:30
↪️ Inscrivez-vous: bit.ly/3jF63JG
Today is the Improving Care for Alpha-1 Patients webinar, co-hosted by MEPs @iwiseler and @mmatias_ - make sure to register and take part! The meeting begins at 14:30 CET #Alpha1Awareness
Register here: bit.ly/3jF63JG
Today is the Improving Care for Alpha-1 Patients webinar, co-hosted by MEPs @iwiseler and @mmatias_ - make sure to register and take part! The meeting begins at 14:30 CET #Alpha1Awareness
Register here: bit.ly/3jF63JG
Alpha-1 Global retweeted
Just one day to go before our online event on Improving Care for Alpha-1 Patients in Europe, co-hosted by MEPs @iwiseler and @mmatias_ - make sure to register and take part! #Alpha1 #EuropeanParliament #RareDiseases @Alpha1_Global bit.ly/3jF63JG
Alpha-1 Global retweeted
With just one week to go before our online discussion on Improving Care for Alpha-1 patients in Europe, we encourage everyone interested, to sign up! bit.ly/3jF63JG #Alpha1 #RareDiseases #EuropeanUnion
