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Rare Disease Innovation and Partnering Summit 2019

Rare Disease Innovation and Partnering Summit 2019


Date of beginning

Thursday, 13 June 2019


2 days




United States


Christina Coby


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As genomics and advanced diagnostics expand our understanding of rare diseases, so too does the scope of impact expand. Today, more than 30 million Americans live with a rare disease – one in ten. While the industry has seen growth and heightened focus around the pursuit of orphan products and rare therapies, we’ve only scratched the surface. Stakeholders, including industry, patient groups, investors and policy makers, must unite in areas of unmet medical need to create life-transforming therapies and breakthroughs. Cross communication among industry, nonprofits and vendors and opportunity for accelerated learning and networking is critical.Through in-depth discussions on critical issues, case study presentations, peer-to-peer exchange and partnering meetings, this summit provides a platform to increase chances of therapeutic success for drug developers, patient groups and investors within the rare disease marketplace. Business brings breakthroughs. Breakthroughs can transform lives.The 2019 Rare Disease Innovation and Partnering Summit focuses on critical and evolving topics including reimbursement and access of novel therapies and strategic approaches to commercialization of rare disease products. Hear from industry thought leaders and patient advocates who have designed and led innovative approaches to complex challenges in driving curative progress.Join us this June in Boston to build powerful connections and advance new business opportunities. We hope to see you there!URLs:Tickets: Conference Rate - until April 12: USD 1999.0Patients & Patient Advocate Rate - until April 12: USD 499.0Vendors / Consultants / Solution Providers: USD 2899.0Artists / Speakers: Matthew Boyd, Vice President, Regulatory Affairs, North America, Sobi, Mike Pistone, Director, Innovation Acceleration, Innovation Ventures, Cincinnati Children’s Hospital, Jocelyn Duff, Founder & CEO, Cure CMT4J, Dr. Janet Maynard, Director of the Office of Product Development, FDA, Kari Rosbeck, President & CEO, Tuberous Sclerosis Alliance, Robert Metz, Senior Vice President Global Bus Ops and External Affairs, Horizon Pharma, Alison Silva, President and Chief Executive Offi cer, Cotinga Pharmaceuticals Inc., Ali Mohamadi, Executive Director Patient Advocacy, BioMarin, Jeremy P. Springhorn, Chief Business Offi cer, Syros Pharmaceuticals, Clark Paramore, Head of Value, bluebird bio, Wendy White, Chief Patient Offi cer, Virtrisa TherapeuticsThursday June 13, 2019 at 7:00 am (ends Friday June 14, 2019 at 6:30 pm) Venue detailsBoston Marriott Long Wharf296 State Street, Boston 02109, United States