Alpha-1 Global

10/05/2022

Dr. Frank Willersinn is now providing successful examples of advocacy that Alpha-1 Plus has taken in Belgium!

To join, click here: http://ow.ly/NfoF50J3Ons

10/05/2022

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: http://ow.ly/NfoF50J3Ons

03/05/2022

Join us on 10 May 2022 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: https://us02web.zoom.us/webinar/register/WN_wUCZjOcPQ3mPCe_UVyxelw

28/04/2022

Last week, the global Alpha-1 community and Members of European Parliament Isabel Wiseler-Lima and Marisa Matias came together to raise awareness for Alpha-1 during the Improving Care for Alpha-1 Patients webinar, all in anticipation for European Alpha-1 Awareness Day. Read more about the event here: http://ow.ly/of4B50IU16i

If you missed the meeting, you can view the recording here: http://ow.ly/pJgg50IU16j

In anticipation of the 2022 European Alpha-1 Awareness Day on Monday, 25 April 2022, Alpha-1 Global hosted the Improving Care for Alpha-1 Patients webinar. T...

25/04/2022

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: http://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.

21/04/2022

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.

21/04/2022

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.

21/04/2022

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.

21/04/2022

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.

21/04/2022

The Improving Care for Alpha-1 Patients webinar has begun! We are joined today by Members of European Parliament Isabel Wiseler-Lima and Marisa Matias! The presentations will commence following a greeting from our co-hosts

To join, register here: https://t.co/KpQQEvsOZe

21/04/2022

Today is the Improving Care for Alpha-1 Patients webinar, co-hosted by Members of European Parliament Isabel Wiseler-Lima and Marisa Matias - make sure to register and take part! The meeting begins at 14:30 CET

Register here:

Two years after the outbreak of the COVID-19 pandemic, the challenges faced by Alpha-1 patients have not only remained present but have been exacerbated. The experience of these last few years, however, has shaped and provided opportunities for Alpha-1 patients to make their voices heard. With polic...