National MPS Society

National MPS Society The National MPS Society exists to cure, support, and advocate for MPS and ML.

We're excited to share an opportunity with our community. Join the National Tay-Sachs & Allied Diseases Association for ...
09/03/2026

We're excited to share an opportunity with our community. Join the National Tay-Sachs & Allied Diseases Association for an upcoming webinar all about carrier screening. Whether you're planning for your family's future or simply want to learn more, this is a great chance to get informed and ask questions. Register online now: https://ow.ly/l3vj50ZIXrp

09/02/2026

🏔️ In just a few days, Jenny is lacing up her boots and hitting the Appalachian Trail—33 miles, one incredible cause.

Living with Mucolipidosis (ML) has meant more surgeries, more setbacks, and more grit than most of us can imagine. But Jenny's turning every mile into a message: progress is still possible.

She's aiming to raise $333,000 to help fund gene therapy research for Mucolipidosis alpha/beta—and every step starts this weekend.

đź’ś Follow along throughout her journey, and help her cross the finish line. Donate now: https://www.operation2stride.org/blank-3

September is Newborn Screening Awareness Month đź’śWithin the first few days of life, a simple heel prick can be the differ...
09/01/2026

September is Newborn Screening Awareness Month đź’ś

Within the first few days of life, a simple heel prick can be the difference between an early diagnosis and years of searching for answers. For families in the MPS and ML community, newborn screening isn't just a test—it's a head start on treatment, a chance at intervention before symptoms take hold, and sometimes, the reason a child gets to grow up at all.

All month long, we're sharing:
🧬 Stories from families whose lives were changed by newborn screening
🔬 Updates on our work to expand and improve screening access nationwide
đź“Ł What's still ahead in the fight for earlier diagnosis

Follow along, and help us spread the word. Every share brings us closer to a future where no family waits too long for answers.

08/31/2026

đź“ą Missed a session at this year's Conference?

Recordings from our 40th Annual Family & Scientific Conference are now live on our YouTube channel! Whether you couldn't make it to Columbus, want to revisit a favorite session, or share expert insights with your care team, it's all there—waiting for you.

đź”— Start watching now: https://ow.ly/lme050ZHkQS

Oklahoma & surrounding neighbors—mark your calendars!The Oklahoma Rare Disease Fair is just one month away! Whether you'...
08/29/2026

Oklahoma & surrounding neighbors—mark your calendars!

The Oklahoma Rare Disease Fair is just one month away! Whether you're living with a rare disease, caring for a loved one, or simply want to stand with our community, this is a day built for connection, resources, and hope.

đź“Ť Register today: rarediseasefair.org

Not in Oklahoma? Visit the link to discover upcoming rare disease community events happening in Colorado, North Carolina, and Washington.

The National MPS Society is thrilled to share this update with our families on behalf of NeuroGT. If you have any questi...
08/27/2026

The National MPS Society is thrilled to share this update with our families on behalf of NeuroGT. If you have any questions, please don't hesitate to reach out to our team at [email protected]!

08/25/2026

Meet Monica and Avram, parents of Kalel and this year's 2026 Annual Fund Chairs.đź’ś

When Kalel was diagnosed with Hunter syndrome (MPS II) as a toddler, the National MPS Society was there—connecting their family with researchers, physicians, and other MPS families who understood exactly what they were facing.

That connection changed everything. It's why Monica and Avram said yes to chairing this year's Annual Fund without hesitation.

Your gift makes that same moment possible for the next family. It puts a real person in front of someone newly diagnosed. It funds research pushing toward better treatments. It makes sure no one faces this journey alone.

Join them in making a gift today: https://mpssociety.org/en/give/

REMINDER: bereaved loved ones of those we've lost to MPS and ML are invited to join us in Charlotte this October for the...
08/25/2026

REMINDER: bereaved loved ones of those we've lost to MPS and ML are invited to join us in Charlotte this October for the Celebrating Your Cherished Life Experiences (CYCLE) Retreat.

Whether your loss was recent or many years ago, you are welcome here. Grief doesn't follow a schedule, and neither does healing.

đź“Ť Charlotte, NC | October 11-12, 2026
đź“ť Registration open now: tinyurl.com/MPS-CYCLE2026

Come as you are. Leave feeling a little less alone. 🕊️

Address

P. O. Box 14686
Durham, NC
27709

Opening Hours

Monday 8am - 5pm
Tuesday 8am - 5pm
Wednesday 8am - 5pm
Thursday 8am - 5pm
Friday 8am - 5pm

Telephone

+19198060101

Website

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