PKD/CHF & Other Cystic Diseases: From Diagnosis to Daily Living

A Conference for Parents and Caregivers

Sponsored by the PKD Foundation and Mount Sinai Hospital


This two-day conference was held April 5-7, 2013, for parents and caregivers of children dealing with ARPKD, advanced complications of ADPKD in young children, other cystic kidney diseases or congenital hepatic fibrosis (CHF). Topics covered were: daily living with cystic kidney disease, nutrition, dialysis, transplantation and treatment options.


PKD in Children the BasicsPKD in Children: The Basics

Dr. Lisa Guay-Woodford, Pediatric Nephrologist
The George Washington University Children's National Medical Center

Pediatric nephrologist, Dr. Lisa Guay-Woodford provides parents an overview of the basics of PKD in children (both ARPKD and ADPKD) including disease progression and renal replacement options for kidney failure – dialysis and transplantation.

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The Spectrum of Liver Disease in PKDThe Spectrum of Liver Disease in PKD: Approach to Diagnosis & Treatment

Dr. Frederick Suchy, Pediatric Hepatologist
Children's Hospital Colorado

Many children with PKD also suffer from congenital hepatic fibrosis (CHF) and other liver diseases. Dr. Frederick Suchy explains how you effectively manage liver disease while also treating ARPKD.

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Overcoming Nutritional ChallengesOvercoming Nutritional Challenges

Ilana Derman, MS, Renal Dietitian

Registered dietitian, Ilana Derman, discusses why managing your child's diet is critical to his/her overall treatment for PKD. You'll also learn strategies for overcoming nutritional challenges.

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Maximizing Your Treatment OptionsMaximizing Your Treatment Options

Dr. Jeffrey Saland, Pediatric Nephrologist
Mount Sinai Hospital, NYC

Pediatric nephrologist, Dr. Jeffrey Saland, teaches parents about medical issues that accompany a PKD diagnosis, especially as your child matures and how to stay on top of your child's treatment plan.

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Tackling the Non-Medical ChallengesTackling the Non-Medical Challenges

Kathryn Kapoor, LCSW, Social Worker
Mount Sinai Hospital

As if parents with kids with PKD didn't have enough on their plate, there are a variety of non medical issues (e.g. developmental, social, financial) you deal with, many on a daily basis. Social Worker, Kathryn Kapoor, shares insights to help you navigate these issues and thinking about the future, how to transition your child to adult care.

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Family Planning and PregnancyFamily Planning and Pregnancy

Dr. Joanne Stone, Obstetrician
Mount Sinai Hospital

As families of a child with a genetic disease, thoughts of adding to your family bring lots of questions. Dr. Joanne Stone discusses options for family planning and pregnancy in families with children with PKD.

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©2016, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.

©2016, PKD Foundation ·The PKD Foundation is a 501 (c)(3), 509 (a)(1) public charity.