Join us in Orlando, FL, from December 19th to the 21st. You can click the register now button to visit our conference registration site and learn more. We look forward to celebrating the 50th anniversary of the National MPS Society with MPS/ML friends and family from across the nation!
Our mission is to serve those impacted by mucopolysaccharidosis (MPS) and mucolipidosis (ML). These are rare genetic diseases with no cures. We support research, provide families with invaluable resources, and work to increase public and professional awareness.
Have you or your child recently been diagnosed with MPS or ML, or is your child undergoing diagnostic testing? We are here to help and can connect you with the information you need.
Donations to the National MPS Society allow us to support families affected by MPS and ML, fund medical research to find cures for these diseases and keep the public engaged and informed.
Families are the linchpin of our community, and whether it’s financial assistance during a hard time, a special treat for an affected family member or to help make educational dreams come true, we support MPS and ML families across the nation.
We raise money to provide student fellowships and fund research projects. We participate in and host technical conferences that allow researchers to collaborate. We collaborate with other patient support groups and foundations to fund research. Learn about our recent grants and research updates.
An Update on Allievex Dearest Sanfilippo Community Members and Allies, It is with deep sadness…
Angels Among Us: Remembering Our Loved Ones Each year, we remember individuals with MPS or ML who…
Advocacy Groups Join Reagan-Udall Foundation and FDA for Workshop on Developing Biomarkers to Support Accelerated…
Please help us find a cure and help those in need.
50 States for 50 Years The National MPS Society is excited to announce the “50 States for 50 Years” virtual 5k…
Links for Lucas Golf Outing Hosted by Lew and Stacey Montgomery
Join us for the 12th Annual Do It ‘Fore’ Dan Golf Tournament Hosted by Ray and Amy Miller
Great news: beginning Monday July 22, 2024, the California Department of Public Health started screening all newborns for #mucopolysaccharidosis Type II (#HunterSyndrome)!
Newborns in California account for around one in every 16 boys diagnosed with #MPSII in the U.S. each year. While this news can be devastating to families with newborns, thanks to decades of research, work, and advocacy, these newly diagnosed boys will now have the best chance possible of accessing therapies at an early age.
With a number of other states now screening for MPS II, including KY, IL, MO, PA, and WV, more than a fifth of all children born in the U.S. are being screened for MPS II!
Read more: ow.ly/JrKN50SKmyV
1 CommentComment on Facebook
Yes! Way to go California!
It is with deep sadness that we inform you of the impending liquidation of Allievex.
Since the beginning of this drug program with BioMarin (as BMN 250), and then through its acquisition by Allievex (as AX 250), the National MPS Society has been a strong supporter of this drug program and of the #sanfilippo type B community who benefited from its development.
Read more on our website: mpssociety.org/resources/allievex-update/
4 CommentsComment on Facebook
So sad. My thoughts are with these families.
This is so heartbreaking!! 💔
My heart goes out to the whole community 💜
Photos from National Organization for Rare Disorders, Inc. (NORD)'s post
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