Are there any good support groups for alpha-1 antitrypsin deficiency?
As of 2019, there are over 80 support groups in the U.S. for people with alpha-1 antitrypsin deficiency. You can locate a support group at https://www.alpha1.org/Alphas-Friends-Family/Support/Support-Groups . There are also virtual support groups through the Alpha-1 Foundation. Individual support groups may vary. In general, support groups help people affected by alpha-1 to connect with others, learn more about the condition, raise awareness and funds, and provide emotional support.
The Alpha-1 Foundation is committed to finding a cure for alpha-1 antitrypsin deficiency (AATD) and to improving the lives of people affected by the condition worldwide. The Alpha-1 Foundation provides numerous services and support organizations for people affected by alpha-1 and maintains a network of alpha-1 specialty centers. Visit www.alpha1.org.
The Alpha-1 Research Registry, Alpha-1 Coded Testing Study and more information about the Alpha-1 Foundation Genetic Counseling Program can be found at www.alphaoneregistry.org.
AlphaNet is devoted to improving the lives of individuals with Alpha-1 through comprehensive disease management services, clinical research administration and consultative services. Visit www.alphanet.org. AlphaNet's Big Fat Reference Guide (BFRG) is a comprehensive guide and self-management program available on the Internet for individuals living with Alpha-1. Visit www.alphanetbfrg.org.
The COPD Foundation provides patients and families with information on COPD, treatment resources, support programs and an advocacy center. Visit www.copdfoundation.org.