Rare Disease Innovation and Partnering Summit 2019

Rare Disease Innovation and Partnering Summit is organized by EBD Group and will be held from Jun 13 - 14, 2019 at Boston Marriott Long Wharf, Boston, Massachusetts, United States of America.

Who Should Attend:
You will benefit from attending this event if you work for a company that focuses on rare disease and orphan drugs and have responsibilities or involvement in the following areas:
• Market Access
• Rare Disease
• Orphan Drugs
• Commercial Strategy/Operations
• Reimbursement
• Early/Expanded Access
• Launch Excellence
• Product Launch
• Portfolio Management/Strategy
• Marketing
• Development
• Patient Advocacy
• Payer Strategy
• Patient Support/Services

This event will also benefit consultants and solution providers who provide services in the rare disease space.

Description:
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.

Keynote Topics Include:
• Patient and Caregiver Perspectives
• Regulatory and Policy Update Address
• Technology Spotlight
• Science Luminaries
• Focus on Funding

Artists / 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 Therapeutics