We hope to see you at Kennedy Park, CA, on April 27, 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 Society praises Dr. Marks’ leadership at the FDA and urges continued strong leadership to advance MPS treatment…
“In 2018, our family welcomed our youngest daughter, Raelin, into the world. From the moment she was born, we were…
The Wain family’s journey with MPS began in 1987 when their firstborn, Matthew, was diagnosed with MPS I. Doctors…
Please help us find a cure and help those in need.
Exciting news for the MPS community! Denali Therapeutics has started the FDA approval process for Tividenofusp Alfa, a potential new treatment for Hunter syndrome (MPS II), through an accelerated pathway. They also shared positive updates on their ongoing discussions with the FDA about DNL126 through the START program.
Learn more by reading the provided community letter, or visit their webs
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Help raise awareness for MPS Awareness Day!
One powerful way to make an impact is by securing a formal proclamation from your state or local government. We've made it easy—download our proclamation template and instructions, personalize them, and submit your request today!
Instructions: ow.ly/vicU50VsvBc
Template: ow.ly/Y6Zg50VsvBe
Your voice matters. Let’s get MPS Awareness Day recogni
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The National MPS Society expresses deep appreciation and concern following the announcement that Dr. Peter Marks will resign from his role as Director of the U.S. Food and Drug Administration’s Center for Biologics Evaluation and Research (CBER), effective April 5, 2025.
Dr. Marks' leadership has been crucial in advancing therapies for rare diseases, especially MPS. We urge the FDA to maintain st
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