Informazioni sulla Sindrome di Wolfram e sulle patologie correlate

Siti e informazioni utili (lingua Inglese)

Diabetes Insipidus official website
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.
Wolfram Syndrome - Genetics Home Reference
A service of the U.S. National Library of Medicine®. Very instructive website
Wolfram Syndrome website UK
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.
Worldwide Society
of Wolfram Syndrome Families
Wolfram Syndrome website
Band Aides and Blackboards
A site about growing up with medical problems ...any ole type
Wolfram Syndrome - Mytochondrial Form
Information regarding a second form of Wolfram Syndrome
Discussion Forum
The Official WSWSF Discussion Forum
OMIM-Online article on WS
Article on WS with many links to specific references
Researchers Identify And Isolate First Gene For
A Form Of Insulin-Dependent Diabetes
This is an excellent Science Daily article on the discovery of WS gene.
Morbidity and Mortality in the Wolfram Syndrome
Brace yourself. This gives you the cold hard facts.
Alstrom Syndrome - similar to WS
has many of the same symptoms as Wolfram Syndrome, but not the same disease.
The Beaver - a memorial page
A memorial page to a wonderful talented man, the honors bestowed upon him, and experience of his life.
National Organization for Rare Disorders, Inc.(NORD)
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 e-mail: orphan@rarediseases.org
Juvenile Diabetes Foundation International
Juvenile Diabetes Foundation International 120 Wall Street 19th Floor New York, NY 10005-4001 (212) 785-9500 (800) 533-2873 e-mail: info@jdfcure.org
NIH/National Diabetes Information Clearinghouse
NIH/National Diabetes Information Clearinghouse 1 Information Way Bethesda, MD 20892-3560 (301) 654-3327 (800) 891-5388
National Association for Parents of the Visually Impaired
National Association for Parents of the Visually Impaired P.O. Box 317 Watertown, MA 022471-0317 (617) 972-7441 (800) 562-6265 e-mail: napvi@perkins.put.k12.ma.us
Vision Foundation, Inc.
Vision Foundation, Inc. 818 Mt. Auburn Street Watertown, MA 02472 (617) 926-4232 (800) 852-3029 e-mail: mablind@tiac.net
NIH/National Eye Institute
NIH/National Eye Institute Building 31 Rm 6A32 31 Center Dr MSC 2510 Bethesda, MD 20892-2510 (301) 496-5248 e-mail: 2020@B31.nei.nih.gov
National Association for Visually Handicapped
National Association for Visually Handicapped 22 West 21st Street New York, NY 10010 (212) 889-3141 e-mail: staff@navh.org
NIH/National Heart, Lung and Blood Institute Information Center
NIH/National Heart, Lung and Blood Institute Information Center P.O. Box 30105 Bethesda, MD 20824-0105 (301) 251-1222 e-mail: nhlbiic@dgsys.com
American Diabetes Association
American Diabetes Association National Service Center 1660 Duke St. Alexandria, VA 22314 (703) 549-1500 (800) 342-2383
Diabetes Insipidus Foundation, Inc.
Diabetes Insipidus Foundation, Inc. 4533 Ridge Drive Baltimore, MD 21229 (410) 247-3953 e-mail: diabetesinsipidus@maxinter.net
United Mitochondrial Disease Foundation
United Mitochondrial Disease Foundation P.O. Box 1151 Monroeville, PA 15146-1151 (412) 793-8077 e-mail: umdf@nb.net
March of Dimes Birth Defects Foundation
For information on genetics and genetic counseling referrals, please contact: March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains, NY 10605 (914) 428-7100 (888) 663-4637 resourcecenter@modimes.org

Siti e informazioni utili (altre lingue)

(DE) Wolfram-Syndrom
(ES) Asociación Nacional del Síndrome de Wolfram
Asociación integrada por grupo de enfermos, familiares y amigos que luchan contra el Síndrome de Wolfram es España. Tiene como fin mejorar la calidad de vida de las personas que paceden el síndrome y mejorar la asistencia y la información y divulgación del Síndrome de Wolfram
(ES) El Sindrome de Wolfram
El síndrome de Wolfram es una enfermedad neurodegenerativa también conocida por el término acrónimo DIDMOAD (DIDMAOS en español),
(ES) Sindrome de Wolfram Definicion en lenguaje coloquial
Descripción en lenguaje coloquial: El síndrome de Wolfram es una enfermedad extremadamente rara, multisistémica, congénita (que está presente desde el nacimiento) definida como la asociación de diabetes mellitus, diabetes insípida, atrofia óptica y sordera.
(ES) Síndrome de Wolfram Fundacion Health
On Line HON
(FR) Association du syndrome de Wolfram
L'association du syndrome de Wolfram est une association de loi 1901 dont les statuts ont été déposés à la préfecture du Morbihan. L'association est membre d'Alliance Maladies Rares. Date de la déclaration : 27 juillet 2007. Siège social : résidence Gauguin, 56390 Grand-Champ. Présidente : Mme Nolwen JAFFRE 02.97.61.42.37 nolwenn.jaffre@voila.fr Secrétaire : Mme Myriam WATBOT 03.29.31.20.69 myriam.watbot@wanadoo.fr
(FR) Fiche technique Wolfram Syndrome 1
(Wolframin) (WFS1) Human antibody
(FR) Le syndrome de Wolfram. A propos de 3 cas
Le syndrome de Wolfram est une affection neurodégénérative autosomique récessive. Le diabète sucré et l’atrophie optique bilatérale juvéniles en sont ses manifestations majeures et sont suffisants pour établir le diagnostic. Les manifestations urinaires doivent être tenues pour parts intégrantes du syndrome car elles sont présentes jusque dans 62% des cas et représentent une des causes majeures de morbidité.
(FR) Maladie de Wolfram SNOF
Il s'agit dans ce cas du syndrome de Wolfram de type 1 (WFS1), de transmission ...
(FR) Wolfram (syndrome de) - Définition Vulgaris Médical
Le syndrome de Wolfram ne doit pas être confondu avec la maladie de Wolfram qui est une affection génétique due à un déficit enzymatique entraînant une accumulation de lipides (corps gras) dans les tissus appelée lipidose.
(FR) Wolfram Sindrome de: Orphanet France
Le syndrome de Wolfram (SW) est une affection neurodégénérative rare caractérisée par un diabète de type I, un diabète insipide, une atrophie optique et des signes neurologiques.
(FR) Wolfram, Sindrome de
El síndrome de Wolfram es una enfermedad extremadamente rara, multisistémica, congénita (que está presente desde el nacimiento) definida como la asociación de diabetes mellitus, diabetes insípida, atrofia óptica y sordera.
(IT) Danni all'udito di origine genetica
Il meccanismo di azione riguarda uno degli aminoacidi che compongono una proteina presente in piccole quantità nell'orecchio interno
(IT) Descrizione Storia Sintomi Codice esenzione
Regione veneto, storia, sintomi, eziologia, terapia, codice esenzione della Sindrome di Wolfram
(IT) Diabete mellito, sintomi e sindromi associabili al diabete
Descrizione accurata del diabete mellito ed elenco di sindromi associate a questa condizione
(IT) Gary Alan Fine, The Beaver, Everyday genius.
Self-taught art and the culture of authenticity. Artista affetto da Sindrome di Wolfram
(IT) Gaslini di Genova: studio genetico del MODY,
del diabete neonatale e della sindrome di Wolf
Ospedale Gaslini di Genova
(IT) La Sindrome di Wolfram - Orphanet
Descrizione della Sindrome a cura di Orphanet
(IT) Manifestazioni ematologiche nelle malattie
mitocondriali con mutazione del mt-DNA
Studio su una serie di malattie mitocondriali tra cui la Sindrome di Wolfram
(IT) Post-genomica nel diabete mellito
(IT) Sindrome di Wolfram
Rete malattie rare. Descrizione della Sindrome di Wolfram (DIDMOAD)
(IT) Sindrome di Wolfram e retinite pigmentosa
Cos'è la retinite pigmentosa cecità crepusolare e notturna, restringimento del campo visivo
(IT) UO Clinica Pediatrica Ospedale Gaslini
Centro di riferimento Italiano per lo studio della Sindrome di Wolfram
Fundacion Para la Diabetes Insìpida
También conocido como "diabetes de agua", condición rara en la cual los riñones producen altos niveles anormales de orina diluida. Favor de considerar donar a la fundación de Diabetes Insípida, Inc., reconocida por el IRS como no lucrativa. Si ud, esta interesado(a) en donar o contribuir sus talentos, favor de ir al formulario de Donación/Suscripción.