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Phone: +1 503-656-4808
21345 Miles Drive
West Linn
Oregon 97068
USA
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Geographic areas served: world wide

Programs: MLD Family Conferences bringing together dozens of families, researchers, industry and regulators to learn about and discuss research, therapies, practical care and quality of life for MLD affected families. These are the only regularly scheduled MLD specific conferences and are scheduled in the United Sates and internationally.

Mission:
Our mission is focused specifically on MLD. "We C.A.R.E." is our mission: * facilitating Compassion * increasing Awareness * influencing Research * promoting Education Two things differentiate the MLD Foundation from other MLD and leukodystrophy focused organizations ... First is that we are specifically focused on MLD in all aspects of our work. Other foundations may support other diseases, related research, or more generally the whole basket of leukodystrophies. The MLD Foundation recognizes that research needs to expand to include MLD, not just to hopefully spill over to benefit MLD - hence our purpose to influence MLD-specific research. Along with influencing organizations and existing sources of funds, the MLD Foundation does some direct funding of MLD-specific research as well. Second, is that we are not just a fund-raising "machine" that raises money to fund research. The MLD Foundation is actively engaged in the lives of the families suffering with MLD and knows that these families must be supported while we work aggressively towards a cure for MLD.
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18 Reviews
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06/09/11
The MLD Foundation has helped me and my family in so many ways. If I have a question about MLD I can post it through the email discussion board and someone replies almost instantly. The MLD Foundation has always been there for emotional support as well as providing updates and resources for MLD. ... more »
06/08/11
MLD Foundation help raise awareness about MLD, and also support those suffering or are caring for a loved one with MLD. It is a great support system... more »
06/06/11
This Foundation has help us so much. Our family knew nothing about MLD and thanks to Dean and Teryn's help - they have connected us to many many families that are going through the same thing. The discussions have helped us with needs, pain management, symptoms. They are wonderful and we would ... more »
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