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Conference on ARPKD/CHF Features Eminent Speakers from Children’s Hospital of Philadelphia (CHOP) and NIH

The ARPKD/CHF Alliance (autosomal recessive polycystic kidney disease/congenital hepatic fibrosis) held a major conference "Empowering the Patient" on Saturday, November 3, at world-renowned Children's Hospital of Philadelphia (CHOP). The all-day conference, which was attended by ARPKD/CHF families from around the country, featured lectures by world-class kidney and liver disease experts from CHOP, an update on the clinical drug trial of tesevatinib (, a moving personal story from a mother of a child with ARPKD, and closed with the keynote address by Theo Heller, MD, Chief of the Translational Hepatology Section, Liver Disease Branch, NIDDK, NIH, who provided an update on a 10-year NIH research project on ARPKD/CHF. Dr. Heller noted that this research project would never have taken place if not for the herculean lobbying efforts of Colleen Zak, MSN, CRNP, President & Founder of the ARPKD/CHF Alliance. David Piccoli, MD, Chief, Division of Gastroenterology, Hepatology and Nutrition, CHOP, and Susan Furth, MD, PhD, Chief, Divison of Nephrology, CHOP, introduce the day's meeting. Jessica Wen, MD, Hepatologist and Director of the Viral Hepatitis Treatment Program, CHOP, moderated a session and also presented a talk on "Liver Transplantation in ARPKD/CHF." Erum Hartung, MD, MTR, Co-Director of the Kidney/Liver Program and the Associate Director of the Pediatric Nephrology Fellowship Program, CHOP, spoke on "Understanding Imaging ARPKD and Clinical Drug Trial Update on Tesevatinib." Andrew Wehrman, MD, Pediatric Gastroenterologist & Liver Transplant Fellow, CHOP, spoke on "In the Liver: Pathology, Clinical Manifestations, Long-Term Outcome, Understanding Liver Laboratory Results." Kathleen Loomes, MD, Pediatric Gastroenterologist and Co-Director of the Fred and Suzanne Biesecker Pediatric Liver Center and a leader in the Liver Transplant Program, CHOP, spoke on "Portal Hypertension in Congenital Hepatic Fibrosis--Diagnosis & Treatment." Kevin Myers, MBBCh, Assistant Chief of the Division of Nephrology and Co-Director of the Lupus Integrated Nephritis Clinic, CHOP, spoke on "Systemic Hypertension & Renal Transplantation in ARPKD." Theo Heller, MD, Chief, Translational Hepatology Section, Liver Disease Branch, NIDDK, NIH, gave an update on the NIH's 10-year research project on ARPKD/CHF. In his presentation, Dr. Heller paid particular note to the cilia pathologies that are involved in ARPKD, ADPKD, and a number of other diseases. More detailed stories on the conference presentations will be provided in upcoming BioQuick News stories.

[ARPKD/CHF Alliance] [Tesevatinib] [ARPKD, NIH Genetic & Rare Diseases Information Center] [2016 Review of ARPKD Research] [2006 ARPKD/CHF: Summary Statement of a First NIH/Office of Rare Diseases Conference] [Abstract of 2006 ASHG Presentation on ARPKD]