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 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 www.pmsf.org. Please do not contact PMSF directly. A cover letter describing your interest, and your resume, should be emailed as PDFs to firstname.lastname@example.org.
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:
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