About Us

Our mission: The National MPS Society exists to cure, support and advocate for MPS and ML.

Our mission serves individuals, families and friends affected by MPS in the following ways.

To support research

The National MPS Society and its members raise money to provide student fellowships and fund research projects. We participate in and host technical conferences that allow researchers to collaborate and discuss their findings. We collaborate with other lysosomal storage disease (LSD) patient support groups and family research foundations to fund research.

To support families

Our family support programs range from continuing education scholarships to medical travel expense assistance, and we publish a series of resource guides dealing with specific syndromes and treatments that can help families learn more about the MPS diagnosis and the future to come. Our digital newsletter, Courage, features stories on research and medical advances, family news, upcoming events, advocacy opportunities and fundraising efforts. Each year, we hold a conference at different locations, enabling families to meet and learn more about their disease. We also provide emotional support to all those affected by MPS.

To increase public and professional awareness

We sponsor public events, craft press releases, publish syndrome and treatment materials, and maintain a website. This website provides updates on research, legislative activities, family support and upcoming events. We work toward enhanced treatment research and cultivate working relationships with congressional offices and government agencies and advocate for enhancements to federal programs, such as SSI, Medicaid and others important to our families. We participate in international symposiums with a global contingent of medical and scientific professionals and networks with a growing number of international sister organizations.