We hope to see you at Lake Crabtree Park in Morrisville, NC, on March 29, 2025! Can’t join us in-person? No problem: virtual participants are also welcome.
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.
The Wain family’s journey with MPS began in 1987 when their firstborn, Matthew, was diagnosed with MPS I. Doctors…
Click here to read the latest edition of Courage online, or click here to download a PDF copy.
“MPS II, also known as Hunter Syndrome, has been a part of my life for as long as I can remember. I grew up…
Please help us find a cure and help those in need.
REMINDER: adults with MPS or ML (ages 16+) are invited to connect, unwind, and have fun with other community members at our virtual Spring Social! 🌟
📅 Friday, March 28
⏰ 8 PM EST
📍 Zoom
This is a great chance to meet others, share stories, and enjoy an evening of laughter and friendship. Don’t miss out!
🔗 Register now: ow.ly/cwBb50VcLB9
#MPS #ML #ARC #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome
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REMINDER: Join us for a Virtual Science & Research Town Hall!
🗓 March 26 ⏰ 7 PM EST
Meet our new Chief Scientific Officer, Dr. Scott Loiler, and hear the latest on AAV gene therapy from him and Dr. Matthew Ellinwood, Director of Science and Research. Don’t miss this opportunity to learn and ask questions!
🔗 Register now: ow.ly/AHMs50VgM1O
#RareDiseaseResearch #GeneTherapy #MPS #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome #MPSAwareness
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What an incredible time we had at the 2024 Raleigh Run for Rare! 💜🏃♂️ From the inspiring runners and walkers to the amazing supporters cheering us on, it was a day full of energy, community, and hope.
We’re already counting down the days to 2025—and we want YOU to be part of it! Whether you run, walk, or cheer from the sidelines, every step makes a difference. Haven’t signed up yet? Don’t wait!
📅 Register today: ow.ly/cUHq50Vikll.
#RaceForRare #MPSAwareness
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