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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have over 250 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.

The Fibrous Dysplasia Foundation is hiring a part-time (20 hours per week) Program Assistant.
This is a great opportunity for individuals looking for a flexible, part-time position at a fast-growing nonprofit. Candidates will gain valuable experience in nonprofit communications, fundraising support and nonprofit administration, while supporting a great mission.
Interested applicants can apply for this position here.

The Phelan-McDermid Syndrome Foundation (PMSF) is hiring an Executive Director with leadership ability, passion for advocacy and relationship-building skills to help grow the parent-run, largely volunteer Foundation. Seeking a proactive leader to partner with the Board of Directors and to manage future staff, other volunteers and a very engaged patient community. Reporting to the Board of Directors, the E.D. will oversee and guide the development and delivery of programming for family support, advocacy and awareness, while also supporting the scientific mission of PMSF. The E.D. will also lead fundraising/development efforts, be responsible for budgeting, and the building of organizational capacity and communication with internal and external supporters. Proven success in organizational management required. Preference will be given to candidates with nonprofit experience in rare diseases, autism/special needs, healthcare, medical research, or patient advocacy, with a minimum 3 years experience. Four-year degree or higher required. This is a virtual position. Salary range $60-70,000 commensurate with experience. Benefits provided. Specifics will be discussed should position be offered. More information about PMSF can be found at Please do not contact PMSF directly. A cover letter describing your interest, and your resume, should be emailed as PDFs to

VHL Alliance is seeking to hire a Director of Engagement and Outreach who will play a key role in support services, volunteer leadership, and program management and development. The Director’s three main responsibilities are to:

  1. Empower VHL patients to obtain the best holistic care available
  2. Serve as the Team Leader of the VHL Alliance’s Natural History Study (patient databank)
  3. Work with recognized VHL Clinical Care Centers (CCCs) to ensure they are providing outstanding coordinated patient care, and enlist new CCCs based on geographic needs.

To learn more about this job opening and for contact information to apply, please click here.