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15 Nov, 2024

Transportation at Walt Disney World

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

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7 Nov, 2024

Researcher and Advocate: Dr. Kakkis

In the early days of his career, a young scientist named Emil Kakkis found himself deep in the world of...

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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...

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16 Oct, 2024

    2024 Fall Courage

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

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    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...

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    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...

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    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...

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      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...

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