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 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 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!
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.
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.