The Annual Fund helps the Society provide funding for several key programs like Family Support, Pathways, 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.
Angels Among Us: Remembering Our Loved Ones Each year, we remember individuals with MPS or ML who…
Autumn M. was diagnosed with Mucopolysaccharidosis VI (MPS VI) at just 18 months old, at a time when no treatments…
Eddie James Bell Jr. was born on July 29, 1981, and brought love and light to all who knew him until his passing on…
Please help us find a cure and help those in need.
📢 Join Us for a Special Science & Research Town Hall!
The National MPS Society invites you to join us for a virtual event on Wednesday, January 22nd at 7:00 PM EST, where we’ll dive into GenomeConnect—a groundbreaking platform linking patients, families, and researchers in the rare disease community.
What You'll Learn:
💡 Learn what GenomeConnect is and how it supports MPS research.
💡 Discover how you can get involved and make an impact.
💡 Explore the benefits of this powerful resource for families and researchers alike.
Don’t miss this chance to connect with experts, ask questions, and learn how to advance research for MPS and related conditions. RSVP today: ow.ly/GVTp50UGRA4
#NationalMPSSociety #MPS #ML #RareDisease #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome
2 CommentsComment on Facebook
Ryan Ferguson‼️
Don’t let anyone deceive you. If your partner denies it, take control—spy on their WhatsApp, Instagram, Facebook, messages, and calls without touching their phone. Message me!!!!
The wait is finally over! Recordings from the 38th Annual Family & Scientific Conference are now available on our YouTube channel 🤩
View the full playlist: ow.ly/x2Xn50UIGL1
If you haven't already, be sure to mark your calendar for our next event this August 7-9, 2025, in Denver, Colorado. We can't wait to see you there 🥰
#MPS #ML #RareDisease #HurlerSyndrome #HunterSyndrome #Sanfilippo #MorquioSyndrome #MaroteauxLamySyndrome #SlySyndrome #HyaluronidaseSyndrome
0 CommentsComment on Facebook
We are thrilled to share that REGENXBIO announced a strategic partnership with Nippon Shinyaku to develop and commercialize RGX-121 for the treatment of Mucopolysaccharidosis II (MPS II), also known as Hunter syndrome, and RGX-111 for Mucopolysaccharidosis I (MPS I), also known as Hurler syndrome. These gene therapies will be transformative for the MPS community.
“Knowing [REGENXBIO] is keeping the focus on the commercialization and delivery of an approved product safely to our community illustrates their compassion and dedication to our community,” said National MPS Society President and CEO Terri Klein. “Congratulations!”
Read more on their website: regenxbio.gcs-web.com/news-releases/news-release-details/regenxbio-and-nippon-shinyaku-announce-e...
A detailed community letter will be linked in the comments.
28 CommentsComment on Facebook
Link to community letter: mpssociety.org/wp-content/uploads/2025/01/MPS-I-and-MPS-II-community-letter-partner-announcement_...
This is amazing! Leslie Phillips Urdaneta Will this also be for older kids? I was reading and in the trial there was a 13 year old and they said there was neurological improvement. I wonder if they will continue to do it for older kids or it would be more for those who transplant is not an option?
This is so, so huge! Autumn Reese, Marielle Marinoff, Evonlee Harris...and so many others who are going to be jumping up and down (like me!) with this news. <3
