Angels Among Us

Once again, the National MPS Society has published “Angels Among Us, Remembering Our Loved Ones.” Its purpose is to remember individuals with MPS and ML who have passed away but who remain in our thoughts and hearts. Many thanks to the families and friends who submitted entries for 2019. Click here to view Angels Among … Continued

Only 10 Days Left!

There’s only 10 days left to register for the Raleigh Run for Rare 5K which is raising funds to benefit ML and MPS research. The run will take place in the beautiful and historic Dorothea Dix Park in downtown Raleigh, NC. Registration opens at 7:00 a.m. and the run starts promptly at 8:00 a.m. After … Continued
The National MPS Society is proud to announce that the Research Grant Program for 2019 is officially open. In 2019 the Society will continue funding research with the goal of finding treatments and cures for MPS and ML. The application for Letters of Intent is now available for innovative research projects that involve clinical research, … Continued


Our members came out strong to show support for #RareDiseaseDay and honor those that came before them and pave the way for those just starting their journey.

2019 Courage Awards

Did someone you love get a 2019 Courage Award? Do you want them to be in the full gallery of all award recipients, then send an email with a picture to and he’ll update the gallery. To see who is in there now, click here!

Newborn Screening Biomarkers Study

This study is available to patients born in one of the following states: California, Indiana, Michigan, Minnesota, New Jersey, New York, North Carolina, Washington The National MPS Society is working with researchers at the University of Washington to improve the precision in newborn screening for MPS syndromes. The researchers would like to obtain the newborn … Continued

The printed Courage magazine is back!

Welcome to the return of printed Courage–this issue is the first to be delivered since Spring of 2016. Looking back, the very first printed edition of Courage was sent in 1985, and members received a newsletter four times a year. Two years ago, a strategic decision was made to transition to an emailed electronic version. … Continued

Q4 and Annual Fund Donors

Annual Fund Campaign Raises $203,362 2018 HAS BEEN A TERRIFIC YEAR FOR THE 17TH ANNUAL FUND! We reached another new level of giving by of cherished donors to the Society who believe in our mission. This critical funding stream keeps the organization strong. Through your tremendous support you have shown the Society you understand the … Continued

2018 Research Grants Awarded

Dear Friends, Thanks to your hard work and support, the National MPS Society is thrilled to announce the selection of $450,000 in new research grants through our annual research program. This year, the Society will directly fund $550,500 in research, which includes grant awards for both 2018 and the second-year distribution of our 2017 grants.  … Continued