This forum site offers the possibility to get in contact with other families with patients with white matter diseases. We hope this will offer you support and will give the chance to learn from each other.
United Leukodystrophy Foundation
The ULF is primarily a family support group that offers much help with problems of the family from medical to coping. It is also deeply involved in research; working closely with many physicians and scientists throughout the world.
LEUKONET DEUTSCHLAND is a network of experts funded by the Federal Ministry of Education and Research that is dedicated to the research of leukodystrophies. It encompasses ten projects covering clinical research and basic research and two projects for the exchange and coordination of information.
Leukodystrophies are rare metabolic disorders of the nervous system that affect the white matter of the brain and spinal cord.
The GeneTests Web site is a publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.
ORPHANET is a database dedicated to information on rare diseases and orphan drugs. ORPHANET aims to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases. ORPHANET offers services adapted to the needs of patients and their families, health professionals and researchers, support groups and industry.
Office of rare diseases
The goals of the Office of Rare Diseases of the National Institute of Health are to stimulate and coordinate research on rare diseases and to support research to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today.
For Dutch patients - Voor Nederlandse patiënten
Expertise in Kaart heeft een Kenniskaart gemaakt betreffende Wittestofziekten in het VUmc. Deze kenniskaart kan gevonden worden op de website van Expertise in Kaart.
In een aantal ziektes worden de wittestofafwijkingen veroorzaakt door een stofwisselingsziekte. Meer informatie kan gevonden op de website van de vereniging Volwassenen, Kinderen en Stofwisselingsziekten (VKS) .
In een aantal spierziekten wordt ook de wittestof aangedaan. Meer informatie over spierziekten kunt u vinden op de website van het Prinses Beatrix Fonds (PBF) .