This information is provided as a resource and does not constitute an endorsement for any group. It is the responsibility of the reader to decide whether a group is appropriate for his/her needs. For evidence-based information on diseases, conditions, symptoms, treatment and wellness issues, continue searching this site.
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.
United Leukodystrophy Fdn., Inc.
224 N. 2nd St., Ste 2
DeKalb, IL 60115
Voice: 1-800-728-5483 or 815-748-3211
(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.
21345 Miles Drive
West Linn, OR 97068-2878
The above information was 'verified' as correct on the date at the end of each entry. Since American Self-Help Group Clearinghouse's database is extensive but staffing is limited and information for these organizations can change, it is not possible to keep every entry in American Self-Help Group Clearinghouse database completely current and accurate. Please check with the organizations listed for the most current information.
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