National MPS Society

10/19/2026

This Hunter Syndrome Awareness Week, we’re celebrating our Hunter Syndrome community—and our entire MPS and ML community, all year long!

Meet a few of our courageous Hunter Syndrome friends: Alan, Case, Graylon, and Wayne. Their strength, determination, and the lives they live remind us why this community means so much and why we continue working toward a brighter future for every family affected by MPS and ML.

To our Hunter Syndrome families: we see you, we celebrate you, and we’re honored to stand alongside you this week and every week.

Here’s to our incredible community! 💜

10/17/2026

Did you know newborn screening looks different in every state? 💜

Which conditions are screened for depends on where a baby is born. Learning how your state decides, and sharing your story with decision-makers, can help more families get answers sooner. You can learn more about your state here: https://ow.ly/kp9E50ZXnNF

Interested in advocating for increased and screening across the nation? Visit our website and fill out an advocate interest form to get connected: https://ow.ly/BY6050ZXnNC

10/15/2026

Yesterday, the FDA announced the Rare Disease Framework Initiative, a new effort to rethink how treatments for rare diseases like MPS and ML are developed and reviewed.

The FDA will hold a public meeting on October 28, and we’ll share ways for you to take part as soon as they’re available. Read our full statement: https://ow.ly/4YUO50ZY5Kl

10/15/2026

Your story matters. 💜 Living With Courage is a blog celebrating the authentic lives of individuals and families impacted by MPS. If you would like to share your story, we would be honored to hear it.

If you're interested in sharing your story, reach out to our Communications Director, Amber at [email protected]!

10/14/2026

10/13/2026

Missed our newborn screening webinar? You can now watch the recording anytime. 💜

This community conversation with Dr. Matthew Ellinwood explored newborn screening for MPS, and why early identification matters to families.

Watch the replay: https://youtu.be/lWs1Te0thN0?si=DT9lejqgmfrjuFrN

10/09/2026

We can make a difference--together. Make your gift to the 2026 annual fund today💜: https://mpssociety.org/en/give/

10/09/2026

We're hiring! 💜

The National MPS Society is seeking our next President & Chief Executive Officer: a mission-driven leader to guide our team, strengthen support for families, and represent the MPS and ML community on the national and global stage.

This leader will work with a dedicated staff across family support, advocacy, research, philanthropy, communications, and finance, keeping families' voices at the center of everything we do.

📍 Durham, NC
💼 Full-time
🧬 We're looking for curiosity, leadership, and a heart for our community.

Ready to apply? Find the full job description and application links on Indeed and LinkedIn. Links to the postings are in the comments below.

Know someone who would be a great fit? Please share this post! 💜

10/05/2026

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