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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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    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...

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    4 Sep, 2024

    Denali Therapeutics Announces Plans to File for Accelerated Approval of Tividenofusp Alfa (DNL310) for the Treatment of MPS II

    After recent successful meetings with the FDA, Denali Therapeutics announced its plan to file for accelerated...

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    24 Jul, 2024

    Update on Allievex and AX 250

     An Update on Allievex  Dearest Sanfilippo Community Members and Allies, It is with deep...

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    12 Jul, 2024

    Angels Among Us: Remembering Our Loved Ones

    Angels Among Us: Remembering Our Loved Ones Each year, we remember individuals with MPS or...

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    14 Jun, 2023

    37th Annual Family & Scientific Conference

    You are invited to join us in Bethesda, Maryland for our 37th Annual Family Conference! Located just outside...

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