This is where Dr. Fumiko Urano is working on a cure for Wolfram Syndrome following the steps of Prof. Permutt.
The overall goal of the Registry, given the low prevalence of Wolfram syndrome, is to provide a portal to better define the molecular basis for the disease. It will also provide a cohort of patients for clinical intervention when therapeutic agents to treat the underlying disorder become available
DiF's website includes information on all four forms of Diabetes Insipidus, as well as articles, brochures, stories, FAQ's, networking, Research Opportunities, a Professional Section including the Water Deprivation Protocol, and a section for Pets. Please go to the Table of Contents for a detailed listing of the site.
The Snow Foundation’s mission is to raise awareness of and funding for research that one day will stop the progression of Wolfram syndrome. The Snow Foundation supports research being done at the Washington University School of Medicine in St. Louis (WUSM), as well as the patients and families dealing with Wolfram syndrome.
A service of the U.S. National Library of Medicine®. Very instructive website
These final 100 sites were selected after a lengthy nomination period
and were included based on a variety of factors including their
readership, quality of information, search ranking, and update
We are pleased to announce that the website we have created for the UK
families with Wolfram Syndrome is now up & running. Website address is
www.wolframsyndrome.co.uk . Please
take a look & let us know what you think & if there is anything that you
think should be added. We will add more info as we get it also. The
forum will be up & running soon.
Wolfram Syndrome website
A site about growing up with medical problems ...any ole type
This is an excellent Science Daily article on the discovery of WS gene.
Brace yourself. This gives you the cold hard facts.
National Organization for Rare Disorders, Inc.(NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
Telephone: (203) 746-6518
Fax: (203) 746-6481
Toll free: (800) 999-6673
TDD: (203) 746-6927
Juvenile Diabetes Foundation International
120 Wall Street
New York, NY 10005-4001
NIH/National Diabetes Information Clearinghouse
1 Information Way
Bethesda, MD 20892-3560
National Association for Parents of the Visually Impaired
P.O. Box 317
Watertown, MA 022471-0317
NIH/National Eye Institute
Building 31 Rm 6A32
31 Center Dr MSC 2510
Bethesda, MD 20892-2510
National Association for Visually Handicapped
22 West 21st Street
New York, NY 10010
NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
American Diabetes Association
National Service Center
1660 Duke St.
Alexandria, VA 22314
United Mitochondrial Disease Foundation
P.O. Box 1151
Monroeville, PA 15146-1151
For information on genetics and genetic counseling referrals, please contact:
March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains, NY 10605
Wolfram syndrome (WFS) is a rare hereditary neurodegenerative disorder also known as DIDMOAD (diabetes insipidus, diabetes mellitus, optic atrophy, and deafness). WFS seems to be a heterogeneous disease that has not yet been fully characterized in terms of clinical features and pathophysiological mechanisms because the number of patients in most series was small.
In this study we describe 31 Lebanese WFS patients belonging to 17 families; this, to our knowledge, is the largest number of patients reported in one series so far....
Potential adverse events after administration of solutions that are below potency limits may include reduced effectiveness.