Category Archives: News
Transitions: Managing Your Own Healthcare – What Every Teen with an LSD Needs to Know”
Click here for the book: “Transitions: Managing Your Own Healthcare – What Every Teen with an LSD Needs to Know.” This book is intended to help families successfully manage the …
FDA Advisory Committee votes “Yes” to Vimizim for MPS IVA
November 19th was a historic day for individuals with MPS IVA, and the National MPS Society played a huge part!
Caregiving Webinar Thursday, November 21 from 2-3:30 PM EST
There will be a web seminar focused on caregiving on Thursday, November 21 from 2-3:30PM EST. Information about registration can be found here: https://globalgenes.org/caregiver-webinar/. If unable to participate, recording will …
Family Support Programs
Are you an active member of the National MPS Society and need assistance from our Family Support Programs? Learn more about how you can apply for one of our programs online!
National MPS Society Fundraising, Member and Host Survey Results
Interested in the results from the National MPS Society Fundraising, Member and Host Survey? Click here to find out!
Ultragenyx Receives Approval of Clinical Trial Application (CTA) for a Phase 1/2 Trial Testing UX003 in MPS VII
Ultragenyx Receives Approval of Clinical Trial Application (CTA) for a Phase 1/2 Trial Testing UX003 in Mucopolysaccharidosis Type 7 (MPS 7) NOVATO, CA – August 14, 2013 – Ultragenyx …
Give to the 2013 Annual Fund: Chair, Stacy Peters
Have you donated to the 2013 Annual Fund yet?
Your donation to the National MPS Society’s Annual Fund helps move our Mission forward in finding therapies and cures for children who need them and supporting our families.
The Center for Orphan Disease Research and Therapy announces a Request for Applications to support research for improved therapies for patients with MPS I
The Center for Orphan Disease Research and Therapy announces a Request for Applications (RFA) to support research on the development of improved therapies for patients with syndromes due to MPS …
Voting has begun for 2014 Board of Directors
The Nomination process has been completed. If you are a current member of the Society, you received an email on Tuesday September 17th with online directions for voting.
Call for Letters of Intent: #2 Research Initiative 2013 – July 26 deadline
The National MPS Society is seeking to fund research projects that would be likely to generate strong preliminary data for major funding in the following areas. Each grant is awarded …