Foundation for Nager and Miller Syndromes

About Foundation for Nager and Miller Syndromes

The Foundation for Nager and Miller syndromes is an international, non-profit organization that functions as a support group for people affected by two similar genetic conditions (Nager and Miller syndromes) involving severe facial and limb abnormalities. The foundation serves as an information clearinghouse that links other similarly challenged families. An extensive library of resources and medical reports is available to those with Nager and Miller syndromes and their physicians. The organization has initiated and is involved in a genetic research project that is working to locate the genes responsible for these disorders. This study is being conducted at the University of Maryland in Baltimore and John Hopkins. The foundation also provides scholarships to children between the ages of 8 and 18 years who wish to attend a summer camp program in Indiana called About Face. This camp allows children to experience independence and to meet others with similar problems. The foundation publishes a biannual newsletter entitled “All About Me.” Articles from this newsletter are regularly reprinted in various other publications. Interpreters are available for written correspondence in German, Portuguese, French, Italian, Spanish, and Polish.

Related Rare Diseases: