News Archives - Page 2 of 13

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.

36th Annual Family and Scientific Conferences in Nashville, TN

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

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 … 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!

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!

North Carolina Signs Legislation for Newborn Screening to Support RUSP Alignment

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.