Karin Rosbeck
President & Chief Executive Officer TSC Alliance
Kari Rosbeck has served as President and CEO of the TSC Alliance since November 2007 and dedicated 24 years to the organization. During her tenure, the TSC Alliance established a comprehensive research platform fostering collaboration with industry and academia to expedite development of new treatments. 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 for TSC. In 2019, the organization launched a Research Business Plan paired with an aggressive fundraising campaign leading to more than $22 million raised.
Seminars
Thursday 7th May 2026
Panel Discussion: Amplifying Patient Advocacy Impact to Drive Measurable Outcomes
10:00 am
- Best methods for partnering with ultra rare and larger rare patient organizations that maximize measurable outcomes and build-in evaluation components
- Collaboration on data collection from external patient advocacy initiatives without breaching compliance
- Supporting patient engagement efforts that maximize community impact while demonstrating value to your organization
- Understanding the value of building meaningful relationships with Patient Advocacy Organization that lead to successful outcomes for patients and your organization
