Rare @ Penn is a student-run organization with the mission of promoting awareness of genetic disorders, advocating for patients and caregivers of the rare disease community, and supporting further research to improve healthcare accessibility and equity. Rare @ Penn is dedicated to providing greater opportunities in educating the Penn community about these orphan diseases.
Given the limited histories and small patient populations, the vast majority of rare diseases today do not have a cure. In fact, these “orphan” diseases have earned their name as therapeutic companies were (and many still are) uninterested in adopting their treatment. As such, there remains a complete lack of knowledge regarding the quality of life and accessibility of healthcare for patients and their caregivers.
By establishing a forum for and by students, Rare @ Penn will advocate and instigate further research into these critical aspects to enhance the current understanding of medical needs with the goal of improving access and quality, as well as empower patients and caregivers in their fight against these chronic and debilitating conditions.
The organization will host educational seminars, speaker symposia, and collaborative advocacy with national organizations as well as grassroots movements to achieve this mission.
Rare @ Penn brings together student voices, in a communal endeavor, to wield a powerful impact on Penn’s campus, creating a platform that opens up opportunities for students to become involved in rare disease advocacy.