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 specific to ARPKD/CHF.  Our purpose is to improve the lives of those affected.  What we have done:

• Fund research specific to this disease

• Lobbied for the largest research study to date

• Partner with the leading funding agency, the National Institutes of Health for research: “Clinical Investigations into ARPKD and CHF”

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

• Provide FREE newsletters, educational materials, resources, and membership

• Produced Public Service Announcements: “Faces of ARPKD/CHF”

• Developed database for future studies with highest protections

• Co-sponsored the First ARPKD/CHF Medical Symposium

• Hosted the First ARPKD/CHF Conference

• Created "A VOICE" for this disease

Top Goals:

• Galvanize research, to better understand and treat ARPKD and CHF 

• Encourage increased governmental support and funding

• 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, Founding President
Mark Spier, Vice-President
Brian Kopan, Secretary/Treasurer
Rosie Bernardo, Officer
Karen Willdermood, Officer
Tristan Nicholls, Officer

Professional Advisory Board

Ellis D. Avner, M.D.
Director Children's Research Institute, Children’s Hospital Health System of Wisconsin, Associate Dean for Research, Professor of Pediatrics and Physiology, Medical College of Wisconsin

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