Annual Fund 2022

We ask you to join us in making a contribution to strengthen our work and impact the future for those with MPS and ML. Please take a moment to listen to the message below from our Annual Fund Chair and the Director of Family Support & Communication, Leslie Urdaneta.

Big Bake for MPS and ML

Big Bake for MPS and ML now through November 13th! Join us whether you are a professional baker or a professional faker, we need you! There are many ways to … Continued

Newborn Screening Article Release

Matthew Ellinwood, Chief Scientific Officer, authored a new publication published in the American Journal of Medical Genetics outlining newborn screening and suggested improvements based on the National MPS Society’s work … Continued

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. 

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!