Abstracts from HSG 2017
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Current Challenges and Future Opportunities: The Huntington Disease Care Improvement Project
Karen Anderson1, Jack Griffin2, Stevan Ramirez3, Joni Steinman4, Al Kinel4, Shari Kinel3
1Georgetown University, Washington, DC, USA
2Griffin Foundation, Potomac, MD, USA
3Huntington Study Group, Rochester, NY, USA
4Strategic Interests, LLC, Rochester, NY, USA
Background: Numerous Huntington disease (HD) advocacy and research groups exist in the USA, but there has been minimal strategic collaboration between them to date. This project investigated challenges faced by key community stakeholders that utilize one or multiple HD groups, and strategized next steps regarding solutions.
Objectives: To assess the relationship between various HD advocacy and research organizations, and to strategize future opportunities for the HD community.
Methods:In conjunction with the Huntington Study Group, PriceWaterhouseCoopers (PwC) created a structured guide to facilitate stakeholder...