Here is a list of known doctors treating or supporting NDI patients:
UNITED KINGDOM
Professor Detlef Bockenhauer
Great Ormand Street Hospital, London, UK
Phone: 020 7405 9200
Dr Wesley Hayes
Great Ormand Street Hospital London UK
Phone: 020 7405 9200
SOUTH AFRICA
Dr. P. Sigwadi
Unitas Hospital Gauteng, South Africa
Phone: 012 035 0560
UNITED STATES
M Brendan Shannon MD
UW Medicine, Seattle, United States
Phone: 206 520 5000
Dr. Stephanie Jernigan
Children’s Healthcare of Atlanta, Atlanta, Georgia, United States
Phone: (404) 785-5437
Karl Cramer MD
191 Theater Road Onalaska, Wisconsin, United States
Phone: 608-392-9881
Henry L. Schairer, MD
Valley Kidney Specialists Allentown 1230 S. Cedar Crest Blvd.
Suite 301 Allentown, PA United States
Phone: 610-432-4529
Dr. Helen Lovell
Children’s Hospital in Omaha, Nebraska, Omaha, NB United States
Phone: 402-955-4003
Dr. John Makari
Children’s Hospital in Omaha, Nebraska Omaha, NB United States
Phone: 402-955-4003
The NDI Foundation is dedicated to promoting better research and a cure for nephrogenic diabetes insipidus. If you would like additional support, the following organizations may be able to help:
- The Diabetes Insipidus Foundation, Inc.
“The main goal of The Diabetes Insipidus Foundation, Inc. is improved treatment, and ultimately the prevention and cure of all forms of diabetes insipidus through research. DIF promotes a greater public awareness and understanding of the disease and will serve patients and their families with informational material and through the quarterly publication of Endless Water.” - The Diabetes Insipidus Foundation has a chat room.
KidComm and the Child Kidney Disease Mailing List
A group of parents of children who have various kidney diseases and communicate with each other and share news, problems and experiences via an automatic email list. - National Organization for Rare Disorders, Inc.
NORD is the only organization of its kind–a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families–as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities–rely on NORD’s assistance and leadership. NORD is a charity and continues its mission through the kindness and generosity of its donors.
The NDI Foundation is a non-profit organization that supports education of and research into the treatment and cure of nephrogenic diabetes insipidus. We have created a communication channel to serve the entire NDI community: patients and their families, researchers, physicians and other health care providers.
If you would like to help the NDI Foundation by making a donation, please click here. If you would like additional ways to help families with NDI, the following organizations may be able to help:
- DIARD
“The Diabetes Insipidus and Related Disorders organization is for people who have or care for someone with any form of a diabetes insipidus disorder. The main purpose of this network is to offer support for those surrounded by lack of information on these rare disorders. Stories with observations and or helpful hints may be published as part of this network.” - The Diabetes Insipidus Foundation, Inc.
“The main goal of The Diabetes Insipidus Foundation, Inc. is improved treatment, and ultimately the prevention and cure of all forms of diabetes insipidus through research. DIF promotes a greater public awareness and understanding of the disease and will serve patients and their families with informational material and through the quarterly publication of Endless Water.” - The Diabetes Insipidus Foundation has a chat room.
Nephrotic Syndrome Parent’s Place and the Child Kidney Disease Mailing
A group of parents of children who have various kidney diseases and communicate with each other and share news, problems and experiences via an automatic email list. - National Organization for Rare Disorders, Inc.
NORD is the only organization of its kind–a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities. Thousands of affected individuals and their families–as well as support groups, health care and human service professionals, and advocates for people with rare disorders and disabilities–rely on NORD’s assistance and leadership. NORD is a charity and continues its mission through the kindness and generosity of its donors. - Office of Rare Diseases
A government list of links to patient support groups.
If your doctor is not familiar with the treatment of nephrogenic diabetes insipidus, he or she should refer you to a specialist such as a nephrologist, pediatric nephrologist, endocrinologist, or gene therapist. Your doctor can also contact us for more information or referral to an expert in the field.
The American Medical Association has an on-line physician search service that may be of service.
The NDI Foundation is in the process of compiling a list of clinicians around the world who specialize in treating NDI. Check back later for this list.
The NDI Foundation is a non-profit organization that supports education of and research into the treatment and cure of nephrogenic diabetes insipidus. We have created a communication channel to serve the entire NDI community: patients and their families, researchers, physicians and other health care providers.
If you would like to help the NDI Foundation by making a donation, please click here.
