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

Sue Kahn NTSAD PAL AwardSue 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.

In addition, Sue has grown the organization’s assets, staff, and program offerings, including comprehensive resources, programs, and services for families. Recently, Sue led the process to broaden NTSAD’s research direction to focus on clinical development, early diagnosis, newborn screening, and translational research. These programs will be advanced with the hiring of NTSAD’s first Research Director.

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 will be presented at 7:30 AM PST on Tuesday, February 8, 2022, at the 18th annual WORLDSymposiumin San Diego, California.

About the WORLDSymposium Patient Advocate Leader (PAL) Award

Each year, WORLDSymposium recognizes one individual for patient advocacy leadership in the field of lysosomal disease. The Patient Advocate Leader (PAL) award will be presented at WORLDSymposium 2022 on Tuesday, February 8, 2022 at 7:30 AM Pacific Standard Time (PST).

WORLDSymposium’s Patient Advocate Leader (PAL) Award program began in 2016 in order to recognize individuals contributing directly to lives of patients and families dealing with a lysosomal disease through disease awareness and education, community mobilization, non-profit development and/or good governance activities, patient care, and support programs. The recipient is presented with an engraved award and is recognized at the WORLDSymposium scientific meeting held annually in February each year. An announcement of the award recipient is included in the February special lysosomes issue of Molecular Genetics and Metabolism. (This award is given on a yearly basis, but can be omitted in any given year at the discretion of the Planning Committee.) Nominations are solicited annually from members of the lysosomal disease community, planning committee members and attendees of WORLDSymposium.

Past Award Recipients:

2016 Barbara Wedehase, National MPS Society
2017 Christine Lavery, UK Society for Mucopolysaccharide Diseases
2018 Jack Johnson, Fabry Support & Information Group
2019 Mark Dant, EveryLife Foundation for Rare Diseases, National MPS Society
2020 Cara O’Neill, MD, Cure Sanfilippo Foundation
2021 Terri L. Klein, NPGC, National MPS Society, USA