Russ Novy 2/5/25 Russ Novy 2/5/25

What happens when a rare disease drug seems to work, but the health care system doesn’t?

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Russ Novy 2/1/25 Russ Novy 2/1/25

Orphan Disease Center 2024 Million Dollar Bike Ride Grants - $139,416 for STXBP1 Research Awarded

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Russ Novy 1/15/25 Russ Novy 1/15/25

STXBP1 Foundation Accelerates Growth with Addition of New Executive Director

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Charlene Rigby 1/3/25 Charlene Rigby 1/3/25

STXBP1 Census - Q4 2024

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Charlene Rigby 11/3/24 Charlene Rigby 11/3/24

Capsida Biotherapeutics granted orphan drug designation for potential gene therapy for STXBP1-related disorders

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Russ Novy 11/1/24 Russ Novy 11/1/24

FDA Grants Orphan Drug Designation to Capsida Biotherapeutics for Potential Treatment of STXBP1 Developmental and Epileptic Encephalopathy

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Russ Novy 10/15/24 Russ Novy 10/15/24

Advancing Toward Gene Therapies for Rare Epilepsies

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Russ Novy 10/2/24 Russ Novy 10/2/24

Newly Published “Voice of the Patient Report”

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Charlene Rigby 9/30/24 Charlene Rigby 9/30/24

STXBP1 Census - Q3 2024

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Russ Novy 9/19/24 Russ Novy 9/19/24

Six patient advocacy groups collaborate to co-fund a single-center observational study of seizure types in rare genetic epilepsies

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