MPS and ML Disease Information, Donations, and Support

National MPS Society President and CEO Terri L. Klein to Receive 2021 Patient Advocate Leader Award

The annual award recognizes exceptional patient leadership advocacy in the field of lysosomal disease. Presentation will take place Monday, February 8, 2021 at the 17th Annual WORLDSymposium.

COVID-19 Update: National Academies Release Framework for Equitable Allocation of Vaccine

The recommended framework would qualify many individuals with MPS and ML to be among the first recipients of a COVID-19 vaccine when it becomes available.

The Big Bake for MPS and ML!

National MPS Society Bake Sale and Bake Off starts October 30 – November 7!

Now recruiting patients born in: California, Michigan, New Jersey, New York This study is also recruiting any patients in any state who have privately banked cord blood and would provide a single-drop sample. Please contact Leslie Urdaneta directly if interested. This study is recruiting patients with MPS I (attenuated: Hurler-Scheie or Scheie Syndromes), MPS II, … Continued

Research Grants Available for MPS II and MPS IV. Letter of Intent due August 31st.

This is a second round of funding for the 2020 Society Research Program.

2020 Continuing Education Scholarship Recipients

Congratulations to all of this year’s recipients! We’re proud to share their stories and support their journeys.

National MPS Society Names Dr. Matthew Ellinwood CSO

The National MPS Society is pleased to announce the hiring of its inaugural Chief Scientific Officer (CSO), N. Matthew Ellinwood, D.V.M. Ph.D.

Research Update: MPS I Corneal Gene Therapy

Current Study demonstrates potential to provide treatment to both prevent and reverse blindness for individuals with MPS I

COVID-19 and MPS/ML: Information and Support

We are dedicated to providing our members with the latest information and support around COVID-19. We are pleased to offer the following resources to our membership and will continue to update these regularly as the situation necessitates. Coronavirus General Information Severe COVID-19 Complications and MPS and ML Patients Clinical Trial Updates During COVID-19 Infusion Considerations … Continued

Support Sessions – COVID 19 Response

Thank you for your interest in the MPS/ML Support Sessions. This page will be maintained to provide details for active and upcoming Zoom webinar sessions. All sessions are free and open to members of the National MPS Society and to individuals and families with MPS and ML internationally. To sign up to receive regular emails … Continued

2019 Research Grants Awarded

We’re excited to share all of the groundbreaking research we are funding currently!

Learn About MPS

Have you or your child recently been diagnosed with MPS or ML, or is your child undergoing diagnostic testing? We are here to help and can connect you with the information you need.

Give to the National MPS Society

Donations to the National MPS Society allow us to support families affected by MPS and ML, fund medical research to find cures for these diseases and keep the public engaged and informed.

Support those affected by MPS and ML

Families are the linchpin of our community, and whether it’s financial assistance during a hard time, a special treat for an affected family member or to help make educational dreams come true, we support MPS and ML families across the nation.