Join us for an unforgettable evening in Boston, MA, on October 11, 2025, as we commemorate a remarkable milestone – 50 years of hope, progress, and support – at the National MPS Society’s 50th Anniversary Masquerade Gala!
Join us on September 13, 2025, in Long Beach, CA, for this annual 5K & 1-Mile Walk. Not interested in the race? Cheer others on, connect with the community, or attend the beachside picnic. Whatever your preference, we can’t wait to see you there!
Join us on September 27, 2025, in Wilmington, DE, for the first-ever Delaware Dash for Rare! Participants can run, walk, roll, or cheer from the sidelines during the 5K & 1-Mile Walk, or join us after the event for live-music, games, and more.
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.
September is National Newborn Screening Awareness Month—a time to reflect on the life-saving power of early diagnosis…
The National MPS Society is proud to offer a Media Toolkit—a resource designed to help you raise your voice, share…
“Before our sweet son Abe’s MPS I diagnosis in 2024, we had no knowledge of MPS, no idea that we were carriers of…
Please help us find a cure and help those in need.
Join us for our 2025 Delaware Dash for Rare 5K Run & 1 Mile Walk
Join us for the 13th Annual Do It ‘Fore’ Dan Golf Tournament Hosted by Ray and Amy Miller
🌊🏃♀️ The Long Beach Race for Rare is THIS Saturday! Join us at the Granada Launch Ramp for a day of running, walking, and raising awareness for MPS & ML.
Not up for the race? Come for the beachside picnic after the finish line and connect with our amazing community. 🧺💜 There’s still time to register—online or even the morning of the event!
👉 Sign up today and be part of something meaningful: ow.ly/iow150WVcT7
#MPS #ML #RareDisease #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome
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The National MPS Society is proud to be among the 190 patient advocacy organizations who have signed a letter urging Congress to pass the #GiveKidsaChanceAct.
This critical legislation would reauthorize the Rare Pediatric Priority Review Voucher program, which rewards innovation and accelerates potential access to therapies for rare families. It is essential for our community that Congress restores this program.
If you'd like to read the letter, you can do so here: ow.ly/o7VY50WVicb
#Cures4Kids #MPS #ML #RareDisease #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome See less
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September is Newborn Screening Awareness Month!
Early diagnosis saves lives, but too many states still don’t screen, leaving families without answers and a path forward. Every baby deserves the chance for early detection and treatment—no matter where they’re born.
For babies like Benjamin Selser, pictured, an MPS II diagnosis as part of a newborn screening pilot study changed the course of his and his family's future.
“Screening for this condition at birth improves not only the quality of life for children, but for their families as well,” said Benjamin's parents, Megan and Edward. “Knowing [his diagnosis] early has connected us to all of the people we never knew we would need to navigate this journey.”
📣 Learn more and join us in pushing for nationwide screening: mpssociety.org/resources/nbs-month-2025/
#NewbornScreeningMonth #MPSAwareness #NationalMPSSociety #MPS #ML #RareDisease #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome
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