MPS and ML Disease Information, Donations, and Support

COVID-19 and MPS/ML: Information and Support

New Frequently Asked Questions on COVID-19, vaccine distribution, and the impacts on the rare disease community. Click through for some common answers from our CSO and Scientific Advisory Board.

Courage Magazine – December 2020

Our December issue of printed Courage is out now, just in time for the holidays! It features 60 full-color pages of stories, family spotlights, program updates, science & research news, fundraising efforts, and more.

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.

Re-visit the 34th Annual Family Conference

Our Virtual Family Conference has concluded but registered attendees can still access it on-demand through October 12th!

Newborn Screening Study

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

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

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.