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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.

The Familial Dysautonomia (FD) Foundation is seeking an energetic and personable Fundraising and Communications Intern for the Fall 2022 semester. The Foundation raises funds to support medical care and research to help those affected by FD, a rare Jewish genetic disorder. The intern will have the opportunity to work in a hands-on environment with a small, fast-paced team. Days are flexible, but we ask that you work at least 2 days/week. The internship is hybrid. Interested candidates should send a resume, cover letter and writing sample to [email protected] Learn more.

The Myotonic Dystrophy Foundation is hiring for a Program Director to support an amazing rare neuromuscular community! This position will lead outreach, support & education initiatives for a national nonprofit with a global mission. Come work with great people who value compassion, empathy, and knowledge! Learn more.

The Senior Manager of Integrated Marketing Communications (IMC) will manage all aspects of communications development for Uplifting Athletes under one brand strategy. This role will manage the end-to-end IMC planning process and content development/execution across all constituent touch points to assure consistency in messaging and alignment with the Uplifting Athletes brand. The role includes staff and consultant/agency management, creative development, creative approvals, leading cross-functional teams, and collaboration with key internal and external partners. Marketing and agency experience preferred. Learn more.

The Williams Syndrome Association (WSA) seeks a dynamic and visionary Executive Director to build on its 40-year history as the leading resource for individuals with Williams syndrome. The new director will lead this vibrant and close-knit organization through its next exciting stages of growth. WSA provides resources and referrals, funds research, and offers a range of programming and lifetime community support for over 6000 individuals with Williams syndrome and their families, and the professionals who serve them. WSA is based in Troy, Michigan but this position may be remote anywhere in the United States. Learn more.

The Myotonic Dystrophy Foundation (MDF) seeks a flexible, experienced administrator who is detail-oriented and well organized. The Manager is responsible for all aspects of daily administration and operations for a mission-driven, nimble, entrepreneurial non-profit, currently located in Preservation Park in Oakland, CA. Key responsibilities include front-line phone interface and problem-solving, basic accounting, office operations and administrative support related to finance, communications, and fundraising, basic staff and program support. Learn more.

The APBD Research Foundation is seeking a part-time Communications and Development Manager (CDM) to help join our small team during this crucial period of growth in our community. Working remotely with key members of the board and staff, the Communications and Development Manager will oversee and manage a multi-channel organizational communications strategy and plan. In addition, the successful candidate will support the organization’s development initiatives, including fundraising campaigns and events, donor communications, and grant proposals. In general, 70% of time will be spent on communications duties and 30% on assisting with fundraising and development activities. Learn more.