The Alpha-1 Foundation

Category:  Patient Advocacy Organization
Scope: International

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.
    • Webinars
    • Podcasts
    • 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.

Contact Information: