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Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Industry Leaders Recruited for Advisory Council

National Tay Sachs & Allied Diseases Recruits Industry Leaders for Advisory Council


Boston, MA—January 30, 2015--National Tay-Sachs & Allied Diseases, the nation’s oldest rare disease patient advocacy group, is intensifying efforts to find treatments for neurodegenerative disorders with the formation of a Corporate Advisory Council (CAC). Comprised of industry leaders with direct experience in developing, funding and commercializing therapies for rare diseases, the CAC will help NTSAD advance its research programs, build clinical trial readiness and promote the rare disease organization to potential partners by highlighting its access to patients, to animal models and other resources.

In 2013, the FDA granted NTSAD orphan drug designations for a Tay-Sachs and Sandhoff gene therapy treatments. Research is currently in pre-clinical development stages in partnership with the Tay-Sachs Gene Therapy (TSGT) Consortium, whose goal is the initiation of a gene therapy clinical trial for Tay-Sachs disease and Sandhoff disease.

“NTSAD’s rich resources should be attractive to companies interested in bringing a therapy to market for this group of lysosomal storage diseases,” said CAC Chair, Marion Howard, M.D., Ph.D., founder of Cambridge BioStrategies. “To build closer ties with these companies, we have assembled a group of experts in both drug development and commercialization who have not only brought drugs for rare diseases to market, but also have a passion for this field.”


Other CAC members are:

  • Oved Amitay, VP, Head of Commercial, Alnylam Pharmaceuticals
  • Ritu Baral, Managing Director, Senior Biotechnology Analyst, Cowen and Company
  • Michael Gladstone, Life Sciences Group Associate, Atlas Venture
  • Kate Haviland, VP Rare Diseases, Idera Pharmaceuticals
  • Joan Keutzer, Ph.D., VP of Scientific Affairs, Genzyme Corporation
  • Greg Licholai, M.D., VP and General Manager, McKinsey Solutions company Spotlight
  • Bradley Campbell, President and COO, Amicus Therapeutics

Read more about NTSAD's Corporate Advisory Council

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