August 3, 2022 – The National MPS Society announces that Xavier Becerra, the Secretary of the Department of Health and Human Services (DHHS) has approved adding MPS II as a condition to the recommended uniform screening panel (RUSP) for newborns. This long-awaited acceptance follows the Advisory Committee on Heritable Disorders in Newborns and Children’s (ACHDNC) approval to move the nomination forward to DHHS after a considerable evidence review.

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.

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.

Registration is now open for the 36th Annual Family and Scientific Conferences! Join us in Nashville, Tennessee at the Sheraton Music City Hotel.

Each year we remember individuals with MPS or ML who have passed away but who remain in our thoughts and hearts. We invite you to join us in reading about and remembering our cherished friends and family. 

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! 

The National MPS Society announces that the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) has voted to recommend mucopolysaccharidosis type II (MPS II, Hunter Syndrome) to the Recommended Uniform Screening Panel (RUSP) for newborn screening.

The National MPS Society is pleased to announce the hiring of a new Director of Development, Tracy Kirby. Tracy’s experience in rare disease includes eight years working with the Batten Disease Support and Research Association (BDSRA) and providing consulting services. Her background includes family support, development, and years of conference planning. Her knowledge of lysosomal storage diseases will help the team at the Society steward crucial relationships, increase resources, and manage national events to serve our MPS and ML communities. Tracy

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. Thank you for sharing your photos and stories with us!

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!

The National MPS Society shares excellent news of the signing of HB 736 in North Carolina. The law is recognized as Recommended Uniform Screening Panel (RUSP) alignment legislation and provides a three-year timeline for the State to begin screening a newborn for a life-threatening condition. These are conditions that were recommended by the Department of Health and Human Services. This forward-thinking legislation implements a platform to save the lives of more than 500 babies each year.

The 2021 Annual Fund is underway! Learn more about our Annual Fund Chair, Stephanie Bozarth, and the importance of this critical campaign for our mission.

The Big Bake for MPS and ML is in full swing! Click here to learn more about this event.

Spread MPS awareness this holiday season with bundled and discounted items in our logo wear store!

Every year, the National MPS Society produces an annual report. This report outlines key fundraising efforts and the work of our amazing committees. It also details the grants we have subsidized and invested, as well as our financials.

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.

Congratulations to recipients of the National MPS Society’s Scholarships! These are awarded to individuals with MPS or ML, their siblings, parents, and children as they pursue higher education. We are pleased to recognize these deserving recipients and acknowledge their hard work!

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.

We are committed to funding research to find treatments and cures for those with MPS and ML. The National MPS Society is pleased to announce awards from Cycle I of the 2021 Innovative Research Grants Initiative. A total of $350,000 will be awarded from this cycle.