US

Management

Stuart Siedman
Head of Patient Advocacy, Global Rare Diseases
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Stuart is the Global Head of Patient Advocacy at Chiesi Rare Diseases where he is responsible for patient advocacy strategy and community engagement across the rare disease portfolio.

 

He has more than 20 years of global advocacy experience both in and outside of the biopharma industry. His most recent experiences were as the Global Director of Public Affairs & Patient Advocacy for the rare blood disorders business unit at Sanofi Genzyme and previously as the leader of Global Patient Advocacy at Bioverativ Therapeutics focusing on their pre-commercial rare disease pipeline.

 

Stuart is also the co-founder and Director of the Sanfilippo Research Foundation, a non-profit dedicated to research into Sanfilippo Syndrome/MPS III, a rare inherited lysosomal storage disorder, of which his son Benjamin was a sufferer.

 

He guided academic-based research from basic science to pre-clinical licensing and was instrumental in building a non-profit consortium that provided funding to launch a company bringing this foundation work to multiple phase I/II gene therapy clinical trials.

 

He participates in number of NGO/GOVT/Industry rare disease groups and associations on advisory boards or as a member.

Stuart holds a bachelors degree in Cognitive Science from the University of Rochester.