@mpssociety
Raleigh Run for Rare 5K
Raleigh Run for Rare 5K
Raleigh Run for Rare will be held on March 29, 2025 at Lake Crabtree Park in Morrisville, NC!
Tell Us What Delayed Access to Treatments Means to You
Tell Us What Delayed Access to Treatments Means to You
Delayed access to approved and emerging therapies for MPS can have life-altering consequences. Many families face barriers such as lengthy approval processes, insurance denials, limited availability of therapies, and geographic or financial challenges. By sharing your personal experience, you can help decision-makers understand the real-world impact of these delays and strengthen advocacy efforts aimed at improving access to life-changing treatments for the entire MPS community.
Submit your photo for Rare Disease Day
Submit your photo for Rare Disease Day
This Rare Disease Day, we celebrate the incredible MPS community and the powerful connections that unite us. To help spread positivity and raise awareness, upload a photo and share it on your social media!
Share your MPS story with us
Share your MPS story with us
Living with Courage Blog
Living with Courage Blog
Living with Courage Blogs Archive - National MPS Society
Angels Among Us Submissions 2026
Angels Among Us Submissions 2026
Access Google Forms with a personal Google account or Google Workspace account (for business use).
National MPS Society Announces Development of a Patient-Controlled MPS Registry
National MPS Society Announces Development of a Patient-Controlled MPS Registry
Apply for Scholarships and Family Support
Apply for Scholarships and Family Support
The Jeffrey Bardsley Scholarship awards up to $5,000 to an individual with MPS or ML.
Advocacy at the National MPS Society
Advocacy at the National MPS Society
Advocacy is the best way for the MPS and ML community to share our stories with lawmakers and policy influencers who can help make a difference on a state and
Register for the Storytelling Series
Register for the Storytelling Series
Everyone has a story—but knowing how to shape it, share it, and use it with intention can feel overwhelming. This four-part webinar series is designed to support individuals and families in the rare disease community as they explore the power of storytelling as a tool for connection, impact, and change. Whether you are a patient, caregiver, sibling, advocate, or ally, this series will help you find your voice, honor your lived experience, and understand when and how to share your story in ways that feel empowering and effective. Through guided reflection, practical exercises, and supportive discussion, participants will leave with tools they can use long after the series ends—ready to turn lived experience into lasting impact.
Visit Our Website
Visit Our Website
Dedicated to guiding and empowering those impacted by MPS and ML, every step of the way for more than 50 years.
Make a Donation
Make a Donation
Your ongoing support directly funds research and family support programs providing hope for the thousands of children, adults and families who cope with MPS
MPS Informational Booklets
MPS Informational Booklets
National MPS Society Shop
National MPS Society Shop
Rare Aware Shop (Adult Resource Committee)
Rare Aware Shop (Adult Resource Committee)
Host an MPS Fundraising Event
Host an MPS Fundraising Event
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