Mobile Divider Image

Links and Resources

Press Releases

cork board with black and white photographs attached
  • Topic:
Clear Tags x
31 Oct, 2024

Walt Disney World Guide for First-Timers

We hope you are planning on joining us in Orlando, FL, from December 19-21, 2024, for our 38th Annual...

View Resource

16 Oct, 2024

    2024 Fall Courage

    Our 2024 Fall edition of Courage is now available electronically to view or download! Click to read the...

    View Resource

    15 Oct, 2024

    Fanny’s Journey with MPS IV A

    "I was born with a rare disease without even knowing it," explains Fanny Z., a 14-year member of the Society...

    View Resource

    4 Oct, 2024

    Lucas’s Legacy

    Lucas was the youngest of four children. From the start, he stood out—not just as the baby of the family, but...

    View Resource

    19 Sep, 2024

      Dr. Matthew Ellinwood to Transition Out of CSO Role in Early Spring 2025

      From Terri Klein, President & CEO: Over four years ago, Dr. Matthew Ellinwood came to work...

      View Resource

      11 Sep, 2024

      Benji: Strong, Confident, and Self-Assured

      Benji C. is a strong, confident, self-assured, loud, and determined 8-year-old with MPS I. When Benji was...

      View Resource

      9 Sep, 2024

      J.R. Anton: A True Tar Heel

      Let us introduce you to Jacob Ray (J.R.) Anton, one of the many faces of MPS. J.R., who passed away...

      View Resource

      5 Sep, 2024

      Update on RGX-121 Treatment for MPS II

      The National MPS Society is pleased to share an update on RGX-121, an investigational gene therapy for MPS II...

      View Resource