The Alpha-1 Association has partnered with Alpha-1 Kids to provide additional resources for the Alpha-1 Community, specifically parents of Alphas. Alpha-1 Kids is a nonprofit organization developed by affected families and their physicians. These resources include:
- Support and information regarding symptoms, testing, genetics and all other resources of the Alpha-1 Association.
- Physician referrals for parents to Alpha-1 specialists throughout the nation.
- The Peer Guide program links parents with other parents as a source of information and support to families hearing the diagnosis for the first time and to those who have been coping with the deficiency for years. They understand, first hand, how overwhelming and frightening it is to receive the diagnosis that their child has Alpha-1 Antitrypsin Deficiency. They want to help others understand what the diagnosis means to the family by providing current information, an open dialogue with professionals and meeting other Alpha-1 families.
- The Genetic Counseling Center is a reosurce for parents in understanding the genetics of Alpha-1. A certified genetic counselor can answer all questions regarding Alpha-1, its genetic implications and its impact on the entire family. Telephone: 1-800-785-3177.
- A Community Discussion Forum by parents of Alpha-1 children, click here.
Contact Information
Alpha-1 Kids
Telephone: 1-877-346-3212
E-mail: info@alph1.org
To join the Alpha-1 Kids E-mail list and learn about upcoming parent telecalls or other topics of interest, please email: info@alph1.org
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