Who We Are:

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

Mission/Purpose:

Patient population needs have always guided 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. 

History:

The ARPKD/CHF Alliance has created impact since establishing in 2001.  We lobbied on behalf of those affected and generated the largest research study to date for  ARPKD and CHF.  Other accomplishments:

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

• Fund research specific to ARPKD and CHF.

• Developed Bereavement & Regional Support, Clinical Care Guidelines, and other projects, noted below.

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

• Developed Public Service Announcements, ie. “Faces of ARPKD/CHF”

• Developed database for future studies with highest patient protections.

• Co-sponsored the First ARPKD/CHF Medical Symposium

• Hosted the First ARPKD/CHF Conference.

• Created "A VOICE" for this disease where once there was none.

Goals:

• Galvanize research to improve understanding and treatment.

• Increase government support.

• Enlist patients, medical professionals, and industry in fight against this disease.

• Build greater capacity by increasing awareness and enhancing support through projects, programs and campaign.

Programs/Projects:

• Professional Educational Project (PEP)

Board of Directors:

Colleen B. Zak, Founding President
Mark Spier, Vice-President
Karen Willdermood, Secretary
Brian Kopan, Treasurer
Rosie Bernardo, 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

Tax ID Number:    

23-3069557