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If you 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!
"... we have a call in to
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."
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.
Keep up to date ...
Sign up for periodic (4-5/yr) MLD Foundation updates via email
by clicking here.
WE C.A.R.E. ...
* Compassion will take you to the MLD Family where you can connect with others.
* 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.
The MLD Foundation is a non-profit 501(c)(3) organization and appreciates your generous support. Please check out our Fund-raisers and MLD Stuff in the boxes below:
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DONATE NOW!
Supporting Compassion for families, Awareness, Research, and Education.
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MLD Family Conference™ - Pittsburgh, PA. July 18-19th
March, 2014 - Learn about our openNHS initiative for Natural History Studies
February, 2014 - MLD Family Compassion Fund™ launches to support families
January, 2014 - new MLD Awareness video
December, 2013 - Shire using new port and now has 5 centers open.
Follow our Blog–
The MLD Foundation has a blog - check it out and follow us here.
March, 2013 - Gene Therapy Trial completes recruiting–
The initial cohort of patient recruiting is complete as of March 2013. There is a very limited compassionate access phase underway.
European MLD Family Conference™ –
Our next European family conference has been delayed until spring of 2014 due to funding constraints.
MEDIA
Empowering Our Children radio interview with Christine Hoffman and Dean Suhr. Listen here
* NDA = non-disclosure agreement
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