Leukodystrophy is a rare neurodegenerative family of diseases that affects people at any age worldwide. Patients and families who face a leukodystrophy diagnosis often have never heard of the word before that day, and are blindsided by the fact that there is extremely limited treatment options most of which are supportive treatment that do not treat the disease only its symptoms and there is no cure. A leukodystrophy diagnosis is a terminal one. There are over 50 different types of leukodystrophy and there are many families that are “undiagnosed” meaning that their condition has been identified as a leukodystrophy but lacks a diagnosis of a specific gene variant, or identified type. Patients and families are often left feeling isolated as there are many medical professionals who have never heard of leukodystrophy and therefore will not know how to expertly care for the patient. This is a global problem; there are significant leukodystrophy “care deserts” around the world. People need a hub to reach out to where a real person is on the other end, whose primary purpose is to guide them to answers and resources to ease their journey with leukodystrophy.

Goals

Improve the quality of life of patients and families affected by leukodystrophies.

Activities

• Provide tools and resources to patients and families on topics that support their overall wellbeing.
• Educate uninformed medical professionals on leukodystrophies.

Myriad Canada is working with The United Leukodystrophy Foundation on this project, a foundation that was established for information sharing and networking amongst patients and families affected by leukodystrophies, and the medical community.