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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 Forum

  • 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 Education Conference. Members are: Jen Bauernfeind, Mark Rabush, Sarah Johnson, Lora Shelton and Leah and Brad Zelk.

You can join the Alpha-1 Families Support Group and receive notice of telecalls and notifications when additional resources are listed on this site.

To request more information about Alpha-1 Families or to request a peer connection please contact:

Cathey Horsak

1-877-346-3212

horsak@alpha1.org

 

Please click here to view a list of:

Online Support Resources

Pediatric Liver Resources

Financial Resources

Research Programs

 

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):

2009 National Education Conference

 

Alpha-1 Liver Disease in Childhood/Liver Transplant in Children

Philip Rosenthal, M.D.

University of California

San Francisco Children's Hospital

Talking to Children about Alpha-1

Dawn McGee, MS, CGC

Alpha-1 Association

Genetic Counseling Center

Latest Liver Research - CliC

Ron Sokol, M.D.

The Children's Hospital of Denver

Helpful Hints for Caregivers

Lynn Oveson,

RN, MN, ANP

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

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

Alpha-1 Parents
Mark Rabush
Alpha-1 Kids

 

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