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.
Join us on September 28-30th just outside of Washington, D.C.! This conference will feature a day of science and advocacy sessions as we meet with the FDA and NIH, and a second day with family conference sessions, care management tracks, and a SPIRIT conference for our adults with MPS or ML (ages 18+). Make plans to come to Maryland to be a part of the event!
This conference will take place at the Hyatt Regency Bethesda Hotel.
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.
LAUNCHING JULY 25, 2023 Dr. White speaks with host Jason Madison about his personal connection with MPS, and…
Dr. Mary Kate LoPiccolo connects with host Jason Madison to discuss medical biochemical genetics and working as a new…
You are invited to join us in Bethesda, Maryland for our 37th Annual Family Conference! Located just outside of…
Please help us find a cure and help those in need.
The 11th Annual Do It Fore Dan Golf Tournament will take place on Friday, October 6th, at the Moccasin Run Golf…
For more information and to register visit our registration page.
The National MPS Society will host a timed 5K Run and Family Walk, beginning at 8:30 AM on Sunday, October 22. The…
Good morning from Capitol Hill! 👋
We're with a group of ROCKSTAR advocates meeting with Senators and Representatives from across the country today!
Want to know how you can be involved? Research your local and national politicians' offices and reach out to them to advocate for MPS, ML, and other rare diseases! Visit our Advocacy resources on our 🌟NEW WEBSITE🌟 or send us a message to learn more!!!
#AdvocacyCommittee #MPSSociety #courage #careaboutrare #SpeakersBureau #MPSAwareness #newbornscreening #advocate #capitolhill #hopeformps #mpsfamily2023 #ConnectedTogether #CureSupportAdvocate #NationalMPSSociety #MPSML #mpsbethesda
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As the 37th Annual Conference officially kicks off, we want to take the opportunity to acknowledge our phenomenal sponsors. Thank you.
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Platinum: Biomarin, Sanofi, Takeda
Gold: Denali Therapeutics, Regenxbio
Silver: JCR Pharmaceuticals, Orchard Therapeutics, Sock It 2 Hunter Syndrome, Ultragenyx Pharmaceuticals
Bronze: Novel Pharma
Exhibitor: Children's Hospital Colorado, LDRTC
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Support from these organizations allows us to grow toward our mission to Cure, Support, and Advocate for MPS and ML.
#mpsfamily2023 #ConnectedTogether #CureSupportAdvocate #NationalMPSSociety #MPSML #mpsbethesda #hopeformps
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We are thrilled and honored to introduce our 2023 Award Recipients. We are lucky enough to have the opportunity to recognize these family members, friends, researchers, scientists, and advocates at the Family and Scientific Conference over the next couple of days.
Each of these individuals goes above and beyond what is asked of them, and works tirelessly to Cure, Support, and Advocate for MPS and ML. If you see them at the conference or know them personally, please be sure to congratulate them on these well-deserved achievements.
We simply would not be where we are already without the work of each of these recipients. THANK YOU.
#mpsfamily2023 #ConnectedTogether #CureSupportAdvocate #NationalMPSSociety #MPSML #mpsbethesda #hopeformps
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Congrats to all - especially the Chairman’s Award - my amazing brother Larry Kirch Susan Bonville Kirch Helen Kirch I love you always for your strong commitment 😘😘😘
