Alpha 1 Global

Our mission is to develop a collaborative global network of Alpha-1 patient leaders, physicians, and researchers, to increase awareness, detection, and access to care for Alphas around the world.

Advocacy


ALPHA-1 ADVOCACY AROUND THE WORLD

earth-globeThe challenges of obtaining the appropriate medical care for Alpha-1 vary by country. Many countries have already made progress in the areas of awareness, detection, health management, and access to augmentation therapy and reimbursement. While countries have different governance structures and healthcare systems that demand a unique approach to advocacy, much can be learned from the experience of Alpha-1 communities that have faced these challenges and won some hard fought battles.

 


ALPHA-1 GLOBAL TOOLKIT

Advocacy Toolkit

A special Alpha-1 Advocacy Toolkit is developed to help mobilize Alpha-1 communities in their efforts to improve access to care, including augmentation therapy. This document aims to assist you to build a successful advocacy strategy, including tools to engage and educate decision makers in your country or region. Alpha-1 leaders must decide which recommendations are relevant given the political, social and cultural context in their particular country, and adapt the information for use in their own language and situation.

The toolkit is available in English, French, German, Italian, Portuguese, Romanian, and Spanish.

 


RAPID TRIAL

On May 28, 2015, the RAPID Trial results were published in The Lancet, one of the world’s oldest and most prestigious medical journals. Lead author Kenneth Chapman, MD, director of the Asthma and Airway Centre of the University Health Network in Toronto, Canada, called the trial “the most rigorous evidence to date that augmentation therapy slows the progression of emphysema in patients with Alpha-1 Antitrypsin Deficiency. The effect of A1-PI seen in this trial was both clinically and statistically significant, finally confirming its benefit in preventing the loss of lung tissue in patients with this potentially debilitating disease.”

View the discussion with Noel G. McElvaney, MD and Kenneth Chapman, MD.

View the video:  Noel G. McElvaney, MD and Kenneth Chapman, MD.

Publication Announcement

Editorial by Dr. Ronald G. Crystal

RAPID Trial Results

 

Alpha-1 Around The Globe

Click on the country flags below to learn more about country specific contact and general information, access to care, and available resources

Join Our Newsletter

Subscribe to stay in touch with the latest in Alpha-1 Global