at MLD Foundation We C.A.R.E.™
at MLD Foundation …
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The current and coming therapies are all most effectve when applied pre-symptomatic … and there is no better pre-symptomatic time than birth. A MLD newborn screen being validated. Soon we will be asking federal and state lab and policy makers to include MLD neworn screening in every state. We need families from each state to help this happen. Click here to learn how you can help!
MLD Foundation has almost 200 videos covering all aspects of MLD, clincial and practical day-to-day care and MLD therapies. There are even videos about IEPs/Education, CBD oil, financial management/SSI, and other real life questions that families have asked at one of our nearly two dozen MLD Family Conferences™. Click to browse!
We know that the MLD Journey is a long and tedious one … but we also know that, like any trip, it’s always better if shared with others. We can connect you with families from all parts of the globe to learn, be supported, ask questions, share experiences … and most importantly, to know that you are not alone.
Your experiences help clinicians, researchers, and policy makers to better understand our disease and to target therapies, research, policy, and supportive resources to be what we need, not what someome in some fancy top floor office thinks we need. ONLY YOU can share your journey – PLEASE CONTRIBUTE your experiences and opinions. You have explicit control over YOUR data – yes you own it – and how it is used. And whenever you answer a question you get to see how your experience compares to the rest of the MLD community so you both give a little and get a little when you participate.
of the general population are carriers. 1 of every 40,000 babies born have MLD
mutations are known to cause MLD. The ARSA gene is on chromosome 22
MLD is one of over 7,000 rare diseases.
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