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One of the Alpha-1 Association's goals is to provide support to members of the Alpha-1 community. Please review the resources we offer:
- Our Support Group Network is comprised of more than 70 Support Groups in the United States. If you cannot find a Support Group near you and you are interested in starting a Support Group, please contact Cathey Horsak by email at: chorsak@alpha1.org or call 1-800-245-6809.
- Our Patient Hotline provides a level of support to newly diagnosed Alphas or Alphas seeking basic information on Alpha-1 or help such as requesting a peer guide, physician referral, requests for literature, etc. The Patient Hotline number is: 1-800-245-6809.
- Our Family Genetics Services provides a Genetic Counseling Call Center that offers information and resource to Alphas, family members and medical professionals on the genetics of Alpha-1 and provides information on testing options. The Genetic Counseling Call Center’s number is 1-800-785-3177.
- The Peer Guide Program connects a newly diagnosed Alpha, or someone whose life has been affected by Alpha-1 (Peer) to another Alpha (Guide) with a similar set of circumstances.
- The Alpha-1 Community Discussion Forum provides an online meeting place for individuals and family members personally affected by Alpha-1. You can ask questions, share your experience, address concerns and showcase successes; and, most importantly, be among others who understand. There are forums based on Alpha-1 childhood liver disease, liver and lung disease, liver and lung transplantation, and Panniculitis. In addition, you will find sections for gene carriers, and caregivers and a listing of current research articles and an Alpha-1 Memory Garden - a place to remember your loved ones.
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The Association partners with CaringBridge to offer a new approach for Alpha families and friends to stay connected and share their experience. Through this website you can create your own unique website so your loved ones can keep track of your progress.
Click here to create a free CaringBridge website.
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