Alone, each Leukodystrophy may be considered rare, but as a group, Leukodystrophies affect approximately 1 in 7,000 individuals.
As more unclassified variants of Leukodystrophies are identified, this number may increase to as high as 1 in 2,000 individuals.*
Although Leukodystrophies may have a greater prevalence than commonly known disorders such as Cystic Fibrosis, they remain virtually unknown in the general population and within the medical community.
As a Foundation, Hunter’s Hope strives to bring HOPE and encouragement to families affected by all Leukodystrophies. We are privileged to serve over 700 families affected by these dreadful diseases through various Family Care Programs, research initiatives and advocacy efforts for newborn screening, both federally and in states nationwide.
We invite you visit the Hunter’s Hope Wall of Fame to see the beautiful faces of hundreds affected by Leukodystrophies.
If you or a loved one is affected by a Leukodystrophy, you are not alone. Please visit our Affected Family Registration page and tell us more about your family. After registering with the Foundation, our Family Care Representative, Kathleen Scott, will contact you to learn more about your family and how we may be able to help you on your journey.