Who We Are

The ARPKD/CHF Alliance is a nonprofit, public charity dedicated to ARPKD (Autosomal Recessive Polycystic Kidney Disease) and CHF (Congenital Hepatic Fibrosis). 
 

Mission/Purpose:

Patient population needs guide our direction.  Our mission is to educate, advocate, support and advance research.  The ARPKD/CHF Alliance was created with the purpose of improving the lives of those affected.  We provide the following:

• Fund research.

• Generated interest for landmark NIH research study:  “Clinical Investigations into ARPKD and CHF.”

• Developed Bereavement and Regional Support, Clinical Care Guidelines, and the Professional Educational Project.

• Provide newsletters, educational materials, and largest single source of ARPKD/CHF information, resources and activities in the world.  All programs and services are free!

• Produced Public Service Announcements -“Faces of ARPKD/CHF”, on YouTube.

• Developed patient database with highest patient protections.

• Co-sponsored the first Medical Symposium and host of the first ARPKD/CHF Conference.

  

   

   

  

Top Goals:

• Galvanize research, to better understand both ARPKD and CHF. 

• Encourage increased governmental support.

• Enlist patients, medical professionals and manufacturers to join together to find and promote care and treatments for this disease.

• Build greater program capacity.  Increase awareness, enhance support, outreach and expand education through projects, programs and campaigns.

Board of Directors

Board of Directors:
Colleen B. Zak, Founder, President
Mark Spier, Vice-President
Brian Kopan, Secretary/Treasurer
Rosie Bernardo, Officer

Professional Advisory Board

William A. Gahl, M.D., Ph.D.
Clinical Director, National Human Genome Research
Institute, Director of NORD’s Intramural Research Program

Meral Gunay-Aygun, M.D.
National Human Genome Research Institute, National Institutes of Health

Theo Heller, M.D.
Hepatologist, Liver Disease Branch/NIDDK/National Institute Of Health

Eric Johnson, Ph.D.
Helix Health, and ACireGeneTics, Greenwich, CT

Bernard S. Kaplan, M.D.
Division Chief of Nephrology, The Children’s Hospital Of Philadelphia, Philadelphia, P.A.

Kevin E. C. Meyers, M.D.
Assistant Division Chief of Nephrology, The Children’s Hospital of Philadelphia, Philadelphia, PA..

David A. Piccoli, M.D.
Division Chief of Pediatric Gastroenterology and Nutrition, The Children's Hospital of Philadelphia, Philadelphia, P.A.

Sharon Terry MA
Executive Director of PXE International, Inc.,
President of the Genetic Alliance, Washington, DC

Vicky Holes Whittemore, Ph.D.
Director, Center without Walls & Advisor, Tuberous Sclerosis Alliance

Affiliations

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Alliance Quick Facts

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Tax ID Number:    

23-3069557