Rare Diseases and Orphan Products Breakthrough Summit 2019
October 21-22, 2019 in Washington, D.C.
The Rare Summit affords an unprecedented opportunity to hear from the experts, including the heads of the three FDA medical centers, and join conversations of the pressing issues facing the rare disease community, including addressing affordability while sustaining innovation, creating a roadmap for collaboration between patient organizations and industry, plus conversations around gene therapy and rare cancers.
- This is the largest and longest standing rare disease conference
- There are over 7,000 rare diseases and 90% of them are still without an approved treatment
- Together we will explore why “The Time is Now”—for research, innovation, advocacy and collaboration
The Summit offers numerous networking opportunities with 95+ speakers, 6 break out sessions, leaders from multiple stakeholder groups, expansive poster sessions, roundtable discussions and much more.
The role of the rare disease patient and caregiver experience in research and innovation is increasingly being acknowledged. As more organizations develop patient registries and natural history studies, they are faced with ethical and legal considerations around issues of data and data ownership. NORD’s Rare Diseases & Orphan Products Breakthrough Summit will explore these challenges, the ramifications and the solutions being proposed.