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.
Raising a child with Alpha-1 Antitrypsin Deficiency (Alpha-1)? You’re not alone. A1F has support and resources available through the A1F Alpha-1 Kids Program.
Patient Information Line
The Alpha-1 Foundation Patient Information Line, 1-800-245-6809, 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.
Peer Guide Program
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.
Parents of Alpha-1 Kids (PAK) Virtual Support Group
The Parents of Alpha-1 Kids (PAK) Virtual Support Group brings together families with Alpha-1 to share experiences and offer support. The PAK Virtual Support Group meets two to four times annually via Zoom.
PAK Meeting Notices
If you would like to receive information and notifications about upcoming PAK meetings, please subscribe to A1F emails. Be sure to select “Alpha-1 Kids (for parents of Alpha-1 children under 25 years of age)” under email communications programs and topics.
For more information about the PAK Virtual Support Group, contact one of the PAK Support Group Leaders:
- Chelsea Boring: (402) 570-0702 or chelseaboring1@hotmail.com
- Erin Carr: (336) 455-1400 or erincarr627@gmail.com
- Nora Kemmerer: (402) 575-8774 or norakemmerer@hotmail.com
A1F Genetic Counseling Services
A1F partners with the University of Florida to provide free genetic counseling services, (855) 476-1227, to Alphas, their family members, healthcare providers, and other individuals considering testing or in need of support. Genetic counseling services help patients understand their genetic risk for developing lung and liver disease, as well as communicating that information to family members.
A1F National Conference
The Alpha-1 Foundation provides travel scholarships for parents of Alpha-1 children to attend the annual 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 Alpha-1 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 an Alpha-1 Kids scholarship, email Cathey Henderson, Director of Patient Services at chenderson@alpha1.org.
A1F Education Days
Six 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 local Alpha-1 community. A1F Education Days are held across the U.S., either in collaboration with an A1F Clinical Resource Center (CRC) or in a specific underserved area.
Resources for Children
Alpha-1 Children’s Books
For children 8 and under: Alpha-1 Alphabet: From A, to ZZ
For children 8-11: Not the Only Alpha-1: A Kid’s Guide to Alpha-1
For tweens and teens: Not the Only Alpha-1: A Teenager’s Guide to Alpha-1
