at MLD Foundation We C.A.R.E.®

at MLD Foundation …

We C.A.R.E.®

Choose a portal for more information & support …

MLD child

MLD Families

Whether newly diagnosed or well-along the MLD journey … we can, will – and want – to help!!!

friends embracing

Extended Family & Friends

Learn about MLD and how you can help the families you love on their journey.

Two clinical researchers

Clinicians & Researchers

A collection of professional resources for clinicans to optimize the care they give a MLD patient

newborn baby feet inside parents heart cupped hands

Newborn Screening

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 Video Library

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!

Kevin Dees on video camera

MLD family conferee 2019 crop shot

Get Connected

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.  

MLD Patient Powered Registery

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. 

patient registry

Meet the MLD Family

Add your story…

1 in 

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.

Make a Difference

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Help & Donate

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