ARPKD| CHF Alliance
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Kid's Blog

Kids 7-18 years old are invitied!

Parentally monitered by mother Deanna Hall, who welcomes blog feedback or other ways to support and connect our kids.

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Support Groups

  • ARPKD Listserv
    For anyone whose lives have been affected by ARPKD/CHF. 
ARPKD-CHF Adult Listserv

    For any adult living with ARPKD, CHF, or Caroli's Disease.
  • ARPKD LOSS Listserv
    Support for people who've lost children to ARPKD.
ADPKD Support

    For anyone with ADPKD.
ADPKD Children Listserv

    For anyone whose lives have been affected by ADPKD.
  • Kidney-Corner Group
    Information and discussion about pediatric kidney diseases.

Government Agencies

  • Government National Kidney Foundation
  • National Institutes of Health (NIH)
  • National Institute of Diabetes and Digestive and Kidney Diseases

  • Division of Kidney, Urologic, and Hematologic Diseases (DKUHD)

Clinical Studies

Top links for studies on ARPKD and CHF:

  • National Institute of Health Study
  • Center Watch
  • Clinical Trials.Gov
  • Trials Center

Medical Journals

  • PubMed Central
  • American Journal of Kidney Disease
  • U.S. National Library of Medicine

Kidney Associations

  • American Society of Nephrology (ASN)
  • Kidney and Urology Foundation of America, Inc (KUFA)
  • American Association of Kidney Patients

    (Great resource for kidney patients)

Liver Associations

  • American Liver Foundation
  • American Association for the Study of Liver Disease

  • Asian/Pacific Liver Association

Pediatric Groups

  • Children’s Liver Support Groups
  • European Society for Pediatric Nephrology  (ESPN)
  • International Pediatric Hypertension Association (IPHA)
  • International Pediatric Nephrology Association (IPNA)
  • Academic Pediatric Society and Society for Pediatric Research



  • Understanding Genetics:  A Guide for Patients and Professionals
    Download the entire manual (pdf format, 1 MB) or by chapter


  • United Network for Organ Sharing (UNOS)
  • The Transplant Patient Partnering Program
  • National Foundation for Transplants