About The Advocacy Group
The United Leukodystrophy Foundation (ULF) is a non-profit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling. The ULF works to establish a communication network among families, increase public awareness and act as an information source for health care providers, while promoting and supporting research into causes, treatments, and prevention of the leukodystrophies.
We were contacted by the ULF as they needed help trying to find a suitable treatment option for their patients. There is currently no approved treatment available to patients in the USA, but the foundation had heard of a product being used by patients in Europe to successfully manage symptoms of the condition. The foundation wanted its patients to have the same opportunity to benefit from this product, however, the group did not know if they could import the product into the USA.