Alpha-1 Kids

The Alpha-1 Kids Program provides information and resources for families of Alpha infants, children, and teens, as well as young adults transitioning to independent care. 

• The Alpha-1 Foundation Patient Information Line is available Monday–Friday, from 9 AM to 5 PM ET, to help parents find Alpha-1 experts, locate resources, and answer Alpha-1-related questions. Call 1-800-245-6809

• The Alpha-1 Foundation Peer Guide Program links parents of newly diagnosed Alpha-1 children with other parents of Alpha-1 children, who can help them navigate life with the condition.

• The Parents of Alpha-1 Kids Virtual Support Group brings together families with Alpha-1 to share experiences and offer support. For more information about this support group, contact one of the following leaders:
  • Chelsea Boring: 1-402-570-0702, or chelseaboring1@hotmail.com
  • Erin Carr: 1-336-455-1400, or erincarr627@gmail.com
  • Nora Kemmerer: 1-402-575-8774, or norakemmerer@hotmail.com

• A certified genetic counselor through the Alpha-1 Foundation’s Genetic Counseling Program can answer questions regarding Alpha-1, its genetic implications, and considerations for additional family testing. Call 1-855-476-1227

• The Alpha-1 Foundation provides travel scholarships for families to attend the A1F National Conference. The conference features a dedicated track with sessions relating to the care of Alpha-1 children, young adults, and their families, and an Alpha-1 Kids room with activities so parents can attend the sessions. The conference provides families with the ability to network with other affected families, access to leading physicians, and the opportunity to learn the latest research and resources from renowned pediatric liver doctors. To apply for a scholarship, email Cathey Henderson at chenderson@alpha1.org.

• Alpha-1 Foundation Education Days are held each year for Alphas, their families, and caregivers. These one-day educational programs provide access to current medical information, timely topics affecting Alphas, resources from leading Alpha-1 experts, and opportunities to connect with the Alpha-1 community. Alpha-1 Education Days are held across the U.S., either in collaboration with a Clinical Resource Center (CRC) or in a specific underserved area.