Rare – Research, Advocacy, Resilience & Empathy Unlocking Strength and Capacity in the Rare Disease Community

Nonprofit organizations vary in size and capacity. They often start with a small group of passionate people brought together with a common focus. Often their mission has a direct impact on the individual member or their communities and loved ones. Today there are over 7,000 identified rare diseases and rare disease advocacy organizations representing patients and families that singularly are small in numbers. In the aggregate, however they represent one-in-ten individuals worldwide. This paper presents a case study of one rare disease advocacy organization from the perspective of an organizational consultant who is also a parent and advocate in the rare disease community. Building upon the case study, the paper includes a review of existing research and literature and interviews with other leaders in the nonprofit and rare disease advocacy community. The capstone examines leadership and other components of nonprofit organizations, including the role of the consultant, that help bring about transformative change and innovation within this sector.