Announcing Dr. Elizabeth Neufeld as Recipient of the National MPS Society Visionary Leadership Award

The National MPS Society announces this year's recipient of the Visionary Leadership Award, honoring an individual that has made a unique and distinctive contribution to the field of MPS. The award is given to a forward-thinker who changed the lives of thousands through their research or philanthropic efforts. We congratulate Elizabeth F. Neufeld, PhD and recognize her as a pioneer and legend in the field of MPS research.

International MPS Awareness Day

Adventures can take place inside, outdoors, traveling, or at home. For International MPS Awareness Day, we embrace opportunities to raise awareness about MPS and ML throughout the month of May! Join our initiatives and celebrate with us as we explore our world and share experiences with others.

Raleigh Run for Rare

Join us at Dorothea Dix Park on March 26, 2022 for the Raleigh Run for Rare. This event will feature a 5K run, 1 mile walk, and post-run family picnic at Harvey Hill. Register today! 

Winter Courage

Our 2021 Winter edition of Courage is now available electronically to view or download! Click to read the latest information in research, clinical trials, family support, development, advocacy, and more. … Continued

100 Patient Project: Unlocking MPS

The 100 Patient Project is an inaugural part of a new registry for MPS and ML: Unlocking MPS. With an initial focus on MPS II, we are launching the 100 Patient Project to harness the revolutionary insights that can come from Whole Genome Sequencing (WGS) to better understand how genetic variation can inform future improvements to MPS disease management. Sign up to join us today!

Science Showcased at 35th Annual Family Conference

This year’s science sessions at the Society’s 35th Annual Family Conference marked the first year of a full concurrent scientific session featuring more than a dozen speakers from the United States, Australia, and Europe and a diversity of presentations. We heard from six scientists who serve on our Scientific Advisory Board (SAB); 10 speakers were past, current, or new recipients of Society Innovative Research Grants.

35th Annual Conference: Family Conference Recap

The 35th Annual Family Conference, Connected Together, united 550 participants from 20 countries around the world. We recognize that we are stronger when we collaborate and learn from one another.