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Rare Disease Conference 2025 - Rare Disease Summit
March 18-20, 2025
Pre-Conference Workshops on March 17, 2025Sheraton Philadelphia Downtown | Philadelphia, PA

Kari Rosbeck
President & CEO at TSC Alliance
Speaker

Profile

Kari has served as President and CEO since November 2007 and has proudly served the TSC community for 23 years. During her tenure, the TSC Alliance established a comprehensive research platform fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. Because of her leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment, including pivotal trials that have led to three FDA-approved drugs specifically for TSC. In 2019, the organization launched a Research Business Plan paired with an aggressive fundraising campaign leading to more than $18 million raised.

Agenda Sessions

  • Funding the Fight – Patient Power in Driving Rare Disease Investment

    3:00pm