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The Alpha-1 Families Virtual Support Group is dedicated to providing support, education and information for Alpha-1 families. This is accomplished by:
- Centralizing educational and informational resources on this webpage
- Facilitating Peer Connections
- Providing information and resource links
- Facilitating an online Discussion Forums
- Conducting Telecalls with Physicians/Experts/Parents
A committee of Alpha parents help to identify needs for this Group and engage in planning for support and educational telecalls and programs at the Alpha-1 Association National Conference. Members are: Jen Bauernfeind, Mark Rabush, Sarah Johnson, Lora Shelton and Leah and Brad Zelk.
To request more information about Alpha-1 Families or to request a peer connection please contact:
Cathey Horsak
1-877-346-3212
chorsak@alpha1.org
To join the Alpha-1 Families Support Group and receive notice of telecalls and notifications when additional resources are listed on this site, please email us here and place Alpha-1 Families in the subject line.
Please click here to view a list of:
Online Support Resources
Pediatric Liver Resources
Financial Resources
Research
E-Education
The following programs are available online from the Alpha-1 Association's National Education Conference (please allow a few minutes for page to load):
2008 National Education Conference
Potential Breakthroughs in Alpha-1 Liver Research
Jeffrey Teckman, M.D.
Saint Louis University School of Medicine
Cardinal Glennon Children’s Medical Center
Potential Breakthroughs in Alpha-1 Lung Research
David Lomas, M.D., Ph.D, Cambridge Institute for Medical Research
Cambridge University
Alpha-1 Parents
Mark Rabush
Alpha-1 Kids
Genetics
Dawn McGee, MS, CGC
Alpha-1 Association
Genetic Counseling,
Medical University of South Carolina
Liver Transplant MELD/PELD Scores
Jose Derdoy, M.D.
Cardinal Glennon Children’s Medical Center
2007 National Education Conference
My Name is Joe: A Family’s Journey through Transplantation
Richard Holloway, Ph.D.
Medical College of Wisconsin
Resources for Alpha-1 Parents
Mark Rabush
President
Alpha-1 Kids
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