ARPKD/CHF Conference Benefits Those Affected
Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis Conference
On April 5, 2008, the ARPKD/CHF Alliance, a nonprofit, lay-advocacy organization hosted a first time ever ARPKD/CHF Conference. This was supported by The Children’s Hospital of Philadelphia, Kyomis’ Gift and Herr’s Chip Factory in-kind gifts. This well attended event discussed key findings, management, and research on ARPKD and CHF. It was an outstanding opportunity to network and learn more about the disease process. As one attendee stated, “I think the overall conference was flawless” and from another, “The conference was excellent. I loved the variety of topics that were discussed”.
ARPKD and CHF are genetic diseases that occur together, affecting both kidneys and liver. It is a chronic and progressive disorder, causing high infant mortality. There are no treatments or cure. The ARPKD/CHF Alliance is the only organization worldwide solely dedicated to this disease; it’s purpose is to improve the lives of those affected.
Conference presenters from The Children’s Hospital of Philadelphia and sessions included: Dr. Bernard S. Kaplan, Chief, Division of Nephrology, “Living with ARPKD”; David A. Piccoli, MD, Professor of Pediatrics, Division Chief of GI and Director of The Fred and Suzanne Biesecker Pediatric Liver Center spoke about “CHF & Caroli’s”; Kevin E. Meyers, MD, Assistant Division Chief Nephrology, Director Fellowship Training, discussed “Kidney Transplant”; Dr. Elizabeth Rand, Associate Professor, Medical Director Liver Transplant Program Director, GI Fellowship Program, presented “Liver Transplant”; Cynthia Green, MSS, LSW Program Manager/Social Worker, Nephrology, discussed “Transitioning from Pediatric to Adult Care”; and from The University School of Pennsylvania School of Medicine, Rebecca Wells, MD, Assistant Professor of Medicine, Gastroenterology and Pathology and Laboratory Medicine, presented “Research Update”; this was followed by a Q & A with Doctors and a Parent/Patient Panel.
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- P. Erb
- Administrative Assistant
- ARPKD/CHF Alliance
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