National MPS Society

The National MPS Society is a non-profit organization dedicated to acting as a support group for families affected by mucopolysaccharidoses (MPS), mucolipidoses (ML) and other related disorders; increasing professional and public awareness; and raising funds to further research into such disorders. Mucopolysaccharidoses, mucolipidoses, and related disorders are rare inherited diseases in which the body is deficient in certain enzymes. As a result, progressive damage occurs as complex sugars accumulate in various tissues of the body. Established in 1974, the National MPS Society promotes patient advocacy, provides referrals to genetic counseling and other services, and has established regional contact families to assist new families and conduct local support meetings. It produces a variety of educational and support materials including a membership directory, books, reports, brochures, videos of conferences, and a quarterly newsletter entitled, “Courage.” The society also has a series of booklets on MPS and ML disorders that are designed to be daily living guides for families as well as tools for professionals who work with affected individuals.