DHHS adds MPS II to the RUSP for Newborn Screening in the United States

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.

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.

Angels Among Us: Remembering Our Loved Ones

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. 

Important Announcement Regarding ABT-003 Clinical Trial

To Our MPS and ML Community, We remain ever mindful that all patients deserve improved treatment and management of their disease, regardless of where an individual is on the MPS or ML path. With this in mind we ask you all to come together in support of the MPS IIIA community as we share news that the … Continued

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! 

Announcing Tracy Kirby, Director of Development

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

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