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Want to know about clinical trials?
Disease progression?
Other questions ...
MLD Foundation is very interested in hearing from you, especially if you are a family with a MLD diagnosis uncertain about therapeutic choices or if you are a professional working with such a family.
We are MLD parents with over 20 years of MLD experience, we've met in person with literally hundreds of families and many dozens of clinicians and pharmaceutical companies. We also know that every MLD patient and family is different. There is no "one size fits all" approach.
We know the pluses, minuses, benefits, risks, and practical impacts of all of the therapies ... and are not biased one way or the other. We personally know the researchers, clinicians, and therapy/no therapy outcomes because we personally know and visit families.
You have to make your own decisions, but we want you to have as much information as possible before you do. And know that will support you no matter what decisions you make.
You may reach us by several methods. Email or phone is preferred but we also can be reached by postal mail or FAX. We are a volunteer organization so please be patient while we reply to your contact. First priority goes to newly diagnosed families.
E-Mail:
Telephone/Voice Message: +1 503-656-4808
Text: +1 503-702-9923
USA toll free: 1-800-617-8387
Postal Mail:
Facsimile (FAX): +1 503-446-2418
please note this is a new fax number effective October 2017