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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.

National Tay-Sachs & Allied Diseases Association (NTSAD), a family-focused patient advocacy organization, seeks a Director of Development to lead its efforts to raise funds to support affected families and to find a cure for Tay-Sachs, Canavan and related rare genetic diseases, with an annual goal of $1.2 million. This is a special opportunity to join the organization now as we embark upon a year-long 60th anniversary celebration. The ideal candidate will have a successful track record meeting or exceeding annual fundraising goals utilizing various fundraising strategies, including Annual Fund giving, events, and grants. Candidates will have the capability to build, develop, and retain strong, positive relationships with donors and NTSAD family members. S/he will be a creative thinker with the ability to inspire and communicate effectively, both in person and through written communications, with individuals, foundations, and board members, and be comfortable asking for money. S/he will work well in a small collaborative environment, be sensitive and be flexible. The position reports to the Executive Director. A personal connection or experience with the rare disease community is not required, but is preferred. A flexible schedule may be arranged.

More information is available on NTSAD’s web site or by contacting Sue Kahn, Executive Director at 617-277-4463 or skahn@ntsad.org.

Dysautonomia Foundation, a small not-for-profit located in mid-town Manhattan, supporting medical care and scientific research for those affected by a rare Jewish genetic disorder, seeks a bright, dynamic individual to oversee fundraising and office operations.
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The CCHS Foundation is seeking a highly motivated and resourceful individual with a passion for non-profit fundraising and rare diseases to join our evolving team. Our organization has operated through the hard work of family volunteers for the past 29 years. We are thrilled to take this monumental step in hiring our first professional staff member to drive our mission and improve the lives of the ~1,200 individuals living with congenital central hypoventilation syndrome (CCHS). This part-time position will work remotely and report directly to our leadership in California and New Jersey.
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The Children’s Cardiomyopathy Foundation (CCF), a national nonprofit organization based in northern New Jersey, seeks a motivated, assertive, and self-directed individual to assist in the coordination of its family support activities. Reporting to the Director of Outreach & Family Support, the Family Support Manager will focus on: 1) managing the member registration process and family database, 2) managing a wide range of family support resources, including discussion forums, online chats, webinars, family matching, hospital care bags, and Heart Buddy programs, 3) overseeing CCF’s Family Assistance Program, and 4) representing CCF at sponsored family conferences and assisting with CCF-hosted family/member meetings.

The position is 30 hours per week with duties performed primarily from the manager’s home with one or two monthly meetings in Tenafly, NJ. The manager is also expected to attend and represent CCF at family meetings and conferences in the tri-state area and nationally when needed (2-3 trips per year on average).

This is a great opportunity for an enthusiastic individual with strong interpersonal, organizational, and project management skills to join a committed team, and help families affected by cardiomyopathy receive support and resources.
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The Children’s Cardiomyopathy Foundation (CCF), a national nonprofit organization based in northern New Jersey, seeks a motivated, assertive, and self-directed individual to oversee its medical outreach activities. Reporting to the Director of Outreach & Family Support, the Medical Outreach Manager will focus on:

1) managing CCF’s Accredited Centers of Care program, 2) managing CCF’s research grant programs, 3) reaching out to the medical community to increase awareness of CCF’s services and develop partnerships with medical experts and hospitals, and 4) representing CCF at medical meetings/events and assisting with CCF’s scientific conference.

The position is 30 hours per week with duties performed primarily from the manager’s home with one or two monthly meetings in Tenafly, NJ. The manager is also expected to attend and represent CCF at medical meetings, health fairs and conference in the tri-state area and nationally when needed (2-3 trips per year on average).

This is a great opportunity for an enthusiastic individual with strong organizational, project management and research skills to join a committed team, get involved in the medical/healthcare field and support advancements in the treatment of cardiomyopathy in children.
Learn more about this job opportunity.