Our Support Network helps Alphas and their families develop an enhanced and healthier sense of personal identity as well as a connection with the larger Alpha-1 community.
The Support Group Network is comprised of more than 80 Support Groups nationwide dedicated to providing support, education and information. These local Support Groups help Alphas and their families live healthier and more satisfying lives through educational speakers, resource sharing and interaction with the larger Alpha-1 community. They are led by devoted volunteers who are passionate about Alpha-1 and are committed to improving the quality of life of those individuals and their families affected by Alpha-1. They also create Alpha-1 awareness in their communities.
The Support Group Network also has four Alpha-1 Virtual Support Groups that provide a forum for Alphas to network with one another, learn from those with similar experiences and provide physicians and expert speakers specific to each group. These Virtual Support Groups meet by telecall and include:
Alpha-1 Families: Parents of young children
Alpha-1 Caregivers: Family members of Alphas
Pre & Post Transplant: Alphas considering transplant and those who have had transplantation surgery
Timely Topics: Quarterly topics and speakers of interest to the Alpha-1 Community
The Peer Connection 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. Through this connection, a newly diagnosed Alpha has the opportunity to discuss difficulties and issues he/she is experiencing with someone who has experienced the same issues.
The Patient Information Hotline provides support to newly diagnosed Alphas, Alphas seeking basic information on Alpha-1, or help such as requesting a peer connection, physician referral, requests for literature, etc.
The Genetic Counseling Program is a free and confidential telephone-based service for Alphas, their family members and health care professionals who want to understand the diagnosis of Alpha-1, how it impacts their lives, and learn how to get tested. Based at the Medical University of South Carolina, our Certified Genetic Counselor is available Monday through Friday from 9:00 am to 5:00 pm ET.
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.