Rare Disease Foundation Email Format
Research ServicesBritish Columbia, Canada2-10 Employees
Based in Vancouver, British Columbia, the Rare Disease Foundation operates in the research services arena with a focus on pediatric rare diseases. It funds patient-focused research projects that are intended to directly improve treatment options and quality of life for affected children, helping to close the gap between research and care. The organization also builds and supports Parent 2 Parent Resource Networks, enabling families to connect and address common challenges, and it seeks to expand these networks to additional regions. It serves families of children with rare diseases and the researchers and clinicians involved in their care, aiming to align research activities with real-world needs. Recent collaborations, including partnerships with The Cultch and Erganeo, illustrate its practice of forming external alliances to advance its mission.