The Alpha-1 Foundation is a not-for-profit Florida corporation founded in 1995 by John Walsh, Sandy Lindsey and Susan Stanley, three people diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). A majority of the Board of Directors is either diagnosed with Alpha-1 or has a family member diagnosed with Alpha-1. The Foundation has developed a solid infrastructure to promote research and the development of new therapies for improving the quality of life for those diagnosed with Alpha-1. It has fostered collaborations with investigators throughout the United States and Europe, working closely with the National Institutes of Health (NIH), the Food and Drug Administration (FDA), people affected by Alpha-1 and the pharmaceutical industry to expedite the development of improved therapies. Alpha-1 is a genetic (inherited) condition that is passed from parents to their children through their genes. Alpha-1 may result in serious lung disease in adults and/or liver disease at any age. The Alpha-1 Foundation is committed to finding a cure for Alpha-1 and to improving the lives of people affected by Alpha-1 worldwide. The Foundation has invested over $90 million to support Alpha-1 research and programs at 123 institutions in North America, Europe, the Middle East, and Australia.
Click the following to learn more about the Alpha-1 Foundation.
Alpha-1 Research Registry
The Alpha-1 Research Registry is a confidential database made up of individuals diagnosed with Alpha-1 and individuals identified as Alpha-1 carriers. The Registry was established to facilitate research initiatives and promote the development of improved treatments and a cure for Alpha-1. Located at the Alpha-1 Foundation, Miami, FL, the Registry employs procedures that ensure the most stringent confidentiality of participants. The Registry is under the direction of Jeanine D’Armiento, Chair of the Alpha-1 Foundation’s Board of Directors and is guided by an Advisory Committee comprised of leaders in the medical, ethical, scientific, and Alpha communities. Individuals enrolled in the Registry have the ongoing opportunity to participate directly in clinical trials of new therapeutic approaches in addition to other research opportunities. To participate in the A1BC you must enroll in the Alpha-1 Research Registry. To join the Alpha-1 Research Registry you must:
- Step 1: Complete the Registration Form
- Step 2: Read and Sign Informed Consent Form
- Step 3: Complete Questionnaire
- Step 4: Provide Medical Tests and Labs (optional)
Click the following link to learn more about the Alpha-1 Research Registry and to join!
Clinical Resource Centers
Clinical Resource Centers (CRCs) are located throughout North America and specialize in patient care, education and research for those with Alpha-1. Some centers treat lung disease and others liver disease. Many have other resources for Alphas, such as support groups, pulmonary rehabilitation and organ transplant programs. There are CRCs in most states but not all. If your state has no CRC, you may be able to find one in a state nearby. And if you happen to know a knowledgeable Alpha doctor in your state who is not in our listings, we’d welcome an application from the doctor.