Harboring Hope
We must reach to find answers for those without treatment options and continue to advocate for the next generations. Take a moment to watch Harboring Hope, exploring areas of unmet need.
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.
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!
Advisory Committee on Heritable Disorders in Newborns and Children Votes to Approve MPS II for Recommended Uniform Screening Panel
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.
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. … 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!