Sue Kahn received the WORLDSymposium™ 2022 Patient Advocate Leader (PAL) Award

Sue Kahn is a leader known for her business acumen and ability to build relationships, collaborate, and drive research at one of the oldest and most respected patient advocacy groups in the rare disease community. For 14 years, Sue has served as the Executive Director of the National Tay-Sachs & Allied Diseases Association (NTSAD) that supports families affected by Tay-Sachs, Canavan, GM1, and Sandhoff.

Since 2007, Sue has used her industry business development experience to broaden NTSAD’s network of industry leaders, scientists, and clinicians, thereby deepening NTSAD’s commitment to multi-faceted collaborations, including the Tay-Sachs Gene Therapy Consortium. In her role Sue has shepherded NTSAD’s investment of more than $4 million in research grants that have been leveraged to more than $30 million in additional grants from the National Institutes of Health and other institutions.

Under Sue’s leadership, NTSAD is on the cusp of having effective treatments for the patients affected by the four diseases that NTSAD represents. Currently, there are 14 drug development programs and clinical trials underway, and industry continues to invest in developing therapies. Sue ensures that the patients’ voices and experiences are heard and incorporated into these programs.

Sue earned her bachelor’s degree in applied mathematics–economics from Brown University and was granted an MBA from the Tuck School of Business at Dartmouth College. Prior to joining NTSAD, Sue held business development and finance positions at Genzyme Genetics and Chiron Diagnostics. After years of volunteer service via non-profit consulting work through Community Consulting Teams (CCT) as well as a family connection to Tay-Sachs disease, Sue was inspired and fortunate to join the rare disease patient advocacy world.

The 2022 Patient Advocate Leader Award was presented at 7:30 AM PST on Tuesday, February 8, 2022, at the 18th annual WORLDSymposium in San Diego, California