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Leukodystrophy

Self Help Clearinghouse

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United Leukodystrophy Foundation, Inc.

National network. Founded 1982. Provides information and resources for leukodystrophy patients and their families. Communication network among families. Promotes research, public and professional awareness. National conference and quarterly newsletter. Dues $35/family; $70/professional.
Write:
United Leukodystrophy Fdn., Inc.
224 N. 2nd St., Ste 2
DeKalb, IL 60115
Voice: 1-800-728-5483 or 815-748-3211
Fax: 815-748-0844
Website: http://www.ulf.org
E-Mail: office@ulf.org
Verified: 2/18/2014

We C.A.R.E.

(Compassion for families, increasing Awareness, influencing and fundraising Research and promiting Education) International. 350+ members. Support for families in the US and internationally. Family discussion list, annual family conference in the US, family gatherings domesticlly and internationally, diagnostic testing and research updates on website, clinical trial design and recruiting assistance, a compassion fund for resource and financial support. Active with reearchers and clinicians to optimize quality of life for loved one(s). Active in policy, newborn screening, NIH, FDA and supporting those with MLD angels.
Write:
MLD Foundation
21345 Miles Drive
West Linn, OR 97068-2878
Voice: 503-656-4808
Website: http://mldfoundation.org
E-Mail: info@mldfoundation.org
Verified: 2/18/2014

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