National MPS Society

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

🎉 Join Us for the ARC Summer Social! 🎉The Adult Resource Committee (ARC) invites adults (16+) in the MPS and ML communit...
06/05/2026

🎉 Join Us for the ARC Summer Social! 🎉

The Adult Resource Committee (ARC) invites adults (16+) in the MPS and ML community to an evening of connection, conversation, and fun!

📅 Friday, June 26
⏰ 8:00 PM ET
📍 Zoom

Come meet others, share experiences, and enjoy a relaxed, welcoming space with friends from across our community. Register online in advance: https://ow.ly/o83c50Z7FHX

🌟 SPIRIT Conference 2026 🌟

We're also excited to hear your thoughts about this summer's SPIRIT Conference in Columbus, Ohio! Have you attended in the past? Are you planning to go this year?

✅ Registration is now open: https://ow.ly/4nIX50Z7FHW
🎓 Scholarship applications are available through July 1

We'd love to connect, answer questions, and help make this year's conference a meaningful experience for everyone.

The National MPS Society was pleased to be among the organizations invited by the FDA to participate in a closed roundta...
06/05/2026

The National MPS Society was pleased to be among the organizations invited by the FDA to participate in a closed roundtable discussion with agency leadership on June 3.

Representing the Society, Chief Operating Officer Sharon King joined fellow rare disease advocates in sharing perspectives on the challenges and opportunities facing individuals and families affected by mucopolysaccharidoses (MPS), mucolipidosis (ML), and other rare diseases.

We're so grateful for the countless advocates who continue to fight for better paths forward for the rare disease community 💜

Great news! ( ) was officially added to the newborn screening panel in South Carolina earlier this week 🤩Read all abou...
06/04/2026

Great news! ( ) was officially added to the newborn screening panel in South Carolina earlier this week 🤩

Read all about it: https://ow.ly/RtP150Z7JKG

❤️ Hope Given. Courage Shared.❤️Join us at our Columbus Conference for a Blood & Plasma Drive, a meaningful opportunity ...
06/04/2026

❤️ Hope Given. Courage Shared.❤️

Join us at our Columbus Conference for a Blood & Plasma Drive, a meaningful opportunity to give back and help save lives.

Inspired by the compassion and generosity that have supported our community through every challenge and triumph, we are coming together to give hope to others through the gift of donation. Sign up online now using the search 'MPS': https://ow.ly/jbHw50Z7xyk

Every donation has the power to make a difference for patients and families facing their own journeys. Whether you choose to donate blood or plasma, your gift can provide comfort, healing, and hope when it is needed most.

🌟 Adults with MPS or ML: SPIRIT is for YOU. 🌟Join us Saturday, August 1, in Columbus, OH, at this special event designed...
06/03/2026

🌟 Adults with MPS or ML: SPIRIT is for YOU. 🌟

Join us Saturday, August 1, in Columbus, OH, at this special event designed by and for adults living with MPS and ML. Connect with peers who understand your journey, explore topics that matter most to you, build new friendships, and discover resources to help you thrive.

SPIRIT (Strength, Purpose, Independence, Resilience, and Initiative Together) provides a unique opportunity to learn, share experiences, and strengthen your community in a welcoming, supportive environment.

💜 Learn More: https://ow.ly/lFgN50Z7jW5

✅ Register Now: https://ow.ly/Pnu450Z7jW3

🎓 Scholarship applications are open through July 1: https://ow.ly/FM9650Z7jW4

Don't miss this opportunity to connect, learn, and celebrate all that makes our community strong. We can't wait to see you in Columbus!

Conference shirts are here! 🦓🦏✨Celebrate our 40th Annual Family & Scientific Conference in style with this special anniv...
06/02/2026

Conference shirts are here! 🦓🦏✨

Celebrate our 40th Annual Family & Scientific Conference in style with this special anniversary design—but don't wait! Be sure to grab your conference swag early so you're ready to dress to impress in Columbus: https://ow.ly/twFC50Z6UmI

Did you know all of the animals featured in our 40th anniversary logo are rare in their own right?

🦓 No two zebras have the same stripe pattern.
🦔 All EIGHT species of Pangolin are considered rare.
🦏 There are only two Northern White Rhinos left on Earth, and scientists are working to save the species through stem-cell technology and IVF!
🦒 Okapis are incredibly rare (and are the only living relative of the giraffe).

Just like the rare animals represented in our logo, our community is extraordinary. We can't wait to celebrate 40 years of courage, connection, and progress with you. Get your shirt today!

We are proud to announce that Sanofi will receive the Visionary Award at our 40th Annual Family & Scientific Conference ...
06/01/2026

We are proud to announce that Sanofi will receive the Visionary Award at our 40th Annual Family & Scientific Conference in Columbus, Ohio.

This special award is reserved for pivotal moments when extraordinary partnership changes what is possible for the MPS and ML community. For more than two decades, Sanofi has stewarded the MPS I patient registry. Through their vision and trust, stewardship of this invaluable resource was transferred to the National MPS Society, ensuring it can continue to grow as a community-driven platform that advances research, advocacy, and patient care.

We are honored to recognize Sanofi for its longstanding commitment to our community and for helping shape a stronger future for individuals and families affected by MPS and ML.

Congratulations, Sanofi! 💜 We can't wait to celebrate with you in Columbus.

As we continue recognizing the remarkable individuals who have helped shape the MPS and ML community, we are honored to ...
05/31/2026

As we continue recognizing the remarkable individuals who have helped shape the MPS and ML community, we are honored to announce another of our 2026 award recipients ahead of this summer’s 40th Annual Family & Scientific Conference in Columbus.

For years, Dr. Paul Orchard has been a trusted leader in MPS care, helping advance treatment options and improve the lives of patients and families around the world. Through his pioneering work in hematopoietic stem cell transplantation and his unwavering commitment to compassionate care, Dr. Orchard has helped shape the standard of care for individuals living with MPS.

The National MPS Society is proud to present Dr. Paul Orchard with the 2026 Legacy Clinician Award. We hope you'll join us in Columbus this summer, where we will celebrate Dr. Orchard and all of our award recipients!

As we prepare to celebrate our 40th Annual Family & Scientific Conference in Columbus, we are proud to begin announcing ...
05/30/2026

As we prepare to celebrate our 40th Annual Family & Scientific Conference in Columbus, we are proud to begin announcing our 2026 award recipients—individuals whose dedication and leadership continue to shape the future of the MPS and ML community.

For decades, Dr. Chester Whitley has helped lead the way in lysosomal disease research through groundbreaking science, visionary leadership, and unwavering commitment to families affected by MPS and ML. From advancing our understanding of these diseases to helping found the WORLDSymposium™, his impact on the rare disease community is immeasurable.

The National MPS Society is honored to present Dr. Chester Whitley with the 2026 Legacy Research Award. We look forward to celebrating Dr. Whitley and all of our award recipients this summer in Columbus!

Big news for our upcoming Conference in Columbus! 💜We’re excited to share important updates regarding scholarships, regi...
05/29/2026

Big news for our upcoming Conference in Columbus! 💜

We’re excited to share important updates regarding scholarships, registration, and family pricing for the 2026 National MPS Society Family & Scientific Conference.

Ready to register? Visit tinyurl.com/mpsfamily2026 for everything you need, including registration, hotel, and scholarship information.

Questions about family pricing options that cap the amount per household at $1,000 ? Contact Leslie at [email protected]

We can’t wait to see you in Columbus 🦁🌿✨

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

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