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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have 280 members who together represent hundreds of diseases. NORD supports these member organizations in a multitude of ways, including listing their job openings on our website. Please see below for current job openings from our member organizations.

Joining the CHI team as a research and policy associate is a great opportunity to participate in exciting and impactful research and advocacy projects in the rare disease space. The program coordinator will work together with CHI staff to support projects related to research, advocacy, and awareness. The CHI research and policy associate will report to the research and policy director. Learn More.

Joining the CHI team as CHI Digital Community Manager is a great opportunity to apply your passion for social and your artistic talents to exciting and impactful projects in the rare disease space. The Digital Community Manager will work together with CHI staff to plan and execute dynamic multimedia social campaigns, relying heavily on analytics and evolving nonprofit best practices and benchmarks in collaboration with key staff, under the supervision of the CHI Associate Director. Learn More.

The IFOPA’s Research Director is responsible for the development and management of the IFOPA’s research strategy which includes: administering FOP research grants; managing research tools and infrastructure; convening scientific meetings; developing and maintaining relationships with academic, clinical and industry partners; and communicating research and clinical studies & trials news with FOP families. Partnering with the Research Director and the IFOPA’s Research Committee, ACT for FOP Scientific Advisory Board, FOP Registry Medical Advisory Board and IFOPA Executive Director. This position supervises the FOP Registry Project Manager. Learn More.

The Bonnell Foundation is looking for a volunteer to do approximately 5 hours of work on our social media platforms. If you are interested please let us know why you would like to help us, and about your experience! Please email [email protected] if interested.

The Desmoid Tumor Research Foundation (DTRF) is looking to hire a U.S.-based Research Director for our new initiative, the DTRF Coordinating Center (DTRFCC). This Center will serve as an administrative core to integrate and coordinate research and data across the DTRF investigators and others, expand the diversity of our research community, and facilitate the exchange of scientific information between the investigators from within the field, as well as from related areas. Learn More.