Why is it important for my loved one to participate in the MLD natural history study?
One of the most important things you can do to help the MLD community, advance research, and improve care for your loved one is to enroll in the MLD natural history study at the Children’s Hospital of Philadelphia. There is no cost or travel required, just fill out this short survey and you will grant permission for your loved one’s medical records to be shared. More than 100 patients are enrolled and our goal is 200.
Being part of a natural history study helps the overall MLD community. Natural history studies can help doctors to design future therapies and to create better guidance for how to care for children. Fill out the survey form and someone will be in contact with you very soon.
Translators are available to assist international patients who do not speak English.
You are not alone, please contact us and we will have a family ambassador contact you.
We will also send you and your loved one a special care package that includes Loie’s Disease, a children’s book to explain leukodystrophy to children, and the “Living with Leukodystrophy” medical resource guide.