Maple syrup urine disease
Organizations
Are there good support groups for maple syrup urine disease?
There are several support groups for maple syrup urine disease. MSUD Family support group is a non-profit organization for individuals with MSUD, their families as well as healthcare professionals. Children Living with Inherited Metabolic Diseases (CLIMB) is a support group based in the United Kingdom. The Organic Acidemia Association is a non-profit for all organic acidemia disorders which includes maple syrup urine disease.
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Where do I find other people with maple syrup urine disease?
How do I donate money to help the cause for maple syrup urine disease?
Where do I find other people with maple syrup urine disease?
One way to find other individuals with maple syrup urine disease is to join a support group such as MSUD Family Support Group and to find out if there are any individuals in your area. Often there are forums on the support group websites that you can join to connect online and through discussions.
How do I donate money to help the cause for maple syrup urine disease?
The MSUD Family support group has a page which allows for donations. These donations according to their website go to "funding a biennial Symposium for families and health care providers, printing and providing updated information to those with MSUD and their families, funding research, and developing educational material for the public. Additional funds are needed for research in the fields of genetics, diet, related behaviors, on-going studies for improved treatment and MSUD related biochemistry. "
