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Rare Advocate Development (RAD) Brain Workshop [Collaboration with Global Genes]

Purpose

Three-day intensive small group workshop trains participants to confidently advance drug development and research goals for their communities. Focused on the development of Central Nervous System (CNS)–based therapies and designed for rare disease patient advocates who are already funding or directly engaging in research. The program blends expert-led learning with practical skill-building in areas including brain structure and function, in vivo and in vitro research tools, diagnostics, therapeutic modalities, IND-enabling studies, clinical research, and regulatory pathways. 


Impact

  • Direct interaction with thought leaders—including CEOs of some of the most innovative therapeutic development companies, along with experts pioneering legal and regulatory practices.

  • Unparalleled insights into the cutting edge of drug development and regulatory science

  • Open pathways for lasting partnerships

The inaugural Workshop was held in New York City in January 2025, with the second program planned for Boston, MA in January 2026. Future locations will alternate to maximize access and participation across the rare epilepsy community.


Learn More

Partnership with Global Genes. Exclusively for REN Members. Applications typically open in September.

Contact: info@rareepilepsynetwork.org

Highlights & Achievements:

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