We C.A.R.E. Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support since 1999!

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Supporting Compassion for families, Awareness, Research, and Education.


Where the MLD Family™ Gathers℠
June 21-21 in Kansas City, Missouri USA

Click to learn more!
Registration opens April 1st

If you are seeking to cure MLD or want to know about metachromatic leukodystrophy (MLD), you've come to the right place! We C.A.R.E.®, we welcome you, and we're glad that you found us!

Featured Therapy:

Gene Therapy Approved for pre-symptomatic late infantiles and early juveniles in the US & EU.

Often your arrival here comes at a time of great personal trauma due to a recent diagnosis or encounter with MLD. We want you to know that you can count on us for support, information and to help you get connected with others who are also on the MLD journey.

Newly Diagnosed? We personally know that pain, panic, uncertainty, and urgency ... and we can help! Please call/text/email us ... we have met hundreds of families in person, regularly meet with the key MLD clinicians and researchers. We can inform, guide, and connect you as you plan care for your loved one.
WE C.A.R.E. ...
* Compassion
will take you to the MLD Family™ pages where you can connect with others.
"... we have a call in to our pediatrician and I know she will ask, what advice are you getting on the MLD Family™ Discussion List? I think that about says it all on how valuable this group is."
* Awareness is where you will find what is being done to increase knowledge of MLD and how you can help.
* Research updates the latest in efforts to treat and cure MLD.
* Education leads to MLD-101 where you will find a comprehensive, yet very readable, layman's overview of MLD.

MLD Foundation is a non-profit 501(c)(3) organization and appreciates your generous support. Please check out our Fundraisers and MLD Stuff in the boxes below:

Upcoming Events:
Please let us know about your event and we'll post it here.

see past events here

Donate Now
Supporting Compassion for families, Awareness, Research, and Education.
Click to specify your Memorial or
In-Honor-of gift.

FDA Approves MLD gene therapy!
On March 18th the FDA approved Lenmeldy™ for pre-symptomatic late infantiles & early-juvenlies, and early-symptomatic juveniles
>> See Details here.

Newborn Screening – Policy Presentation
Presentation from Emerging and Translational Biology of Leukodystrophies Conference
>> See video here.

Reference Book Recommendation
"Caring for Children Who Have Severe Neurological Impairment" by Dr. Julie Hauer paperback or Kindle editions.

Leukodystrohy Consensus Paper –
The GLIA paper "Consensus statement on Preventive and Symptomatic Care of Leukodystrophy Patients" is now available for download.

Follow our Blog–
MLD Foundation has a blog - check it out and follow us here.

* NDA = non-disclosure agreement

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