Description: The Alpha-1 Foundation is committed to finding a cure for Alpha-1 Antitrypsin Deficiency and to improving the lives of people affected by Alpha-1 worldwide. The Alpha-1 Foundation was founded in 1995 by three patients. They collaborate with investigators throughout the United States and Europe, as well as the National Institutes of Health, the US Food & Drug Administration, the pharmaceutical industry and individuals affected by Alpha-1, to promote research and the development of new therapies for Alpha-1 patients. They fund peer reviewed research, operate a patient reported research registry and facilitate a network of clinical resource centers, in addition to offering direct patient education online, on the phone and via a series of regional live events.
Dissemination Capabilities Categories: Social Media, E-Newsletter, Live Events, Print Magazine, Clinical Network, Website, Podcasts
Dissemination Capabilities Description:
- Alpha1 Foundation website - Online platform that offers numerous avenues of information dissemination, including:
- E-education – provides the Alpha1 community access to educational programs from their national conference and national education series.
- Virtual support groups
- Education Days – free conferences for Alpha-1 patients and their families
- Patient information hotline
- Scientific meetings and conferences
- Alpha-1-to-One magazine
- Educational and research brochures for Alpha-1 patients, researchers and healthcare providers.