The challenges of obtaining the appropriate medical care vary by country. Many countries have already faced these hurdles and made progress in the areas of awareness, detection, health management, access to 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 same challenges and won some hard fought battles.
During the 4th International Alpha-1 Patient Congress in Barcelona, Spain in April 2013, Alpha-1 leadership from 20 countries came together to share their experiences. Discussions regarding needs, desires, successes and failures produced a united resolve to stay connected as a collaborative global patient community.
The Alpha-1 Foundation offered its leadership and resources to assist in building a communications platform for the global Alpha-1 community with the goal to connect Alpha-1 organizations and individuals to share ideas, strategies and tools on three main topics: awareness, detection, and access to care. The start-up program was originally referred to as the “Alpha-1 Global Initiative,” but its name was permanently changed to “Alpha-1 Global” on June 1st, 2014.
Alpha-1 Global seeks to:
- Build cohesive communication between the various Alpha-1 associations and organizations.
- Supply up-to-date information about research and the latest Alpha-1 developments around the world.
- Provide access to valuable resources and educational materials in a variety of languages.
- Conduct educational Alpha-1 seminars online.
- Encourage you to actively participate in the online discussion platform, by contributing your knowledge, questions, experiences and ideas.
The Alpha-1 Global website, serves as a hub for global Alpha-1 communications and networking. The following information can be found: Alpha-1 Global publications, events, country specific resources and local contact information in native language, access to care listed by country, news, research information and much more. Additionally, the website has been made available in 5 languages: English, Spanish, French, German and Portuguese. Choose a preferred language by clicking on the “Select a Language” button located in the upper left hand corner of the home page.
4th International Research Conference on Alpha-1 Antitrypsin and 7th Alpha-1 Global Patient Congress
International Research Conference (3-4 April, 2019)
The 4th International Research Conference on Alpha-1 Antitrypsin took place on Wednesday and Thursday, 3-4 April. This meeting included researchers and discussants, and observers interested in Alpha-1 research. On Wednesday, the program took place from 14:00hrs to 17:00hrs and on Thursday from 9:00hrs to 17:00hrs. The Research Conference ended with a reception and dinner for Research Conference participants and Patient Congress participants.
Global Patient Congress (5-6 April, 2019)
The 7th Alpha-1 Global Patient Congress began on Thursday evening, 4 April, with a welcome reception and networking dinner attended by Alpha-1 patients, physicians and researchers . On Friday, the program took place from 9:00hrs to 17:30hrs and on Saturday from 9:00hrs to 17:00hrs.