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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.

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

Not-for-profit research foundation in Miami looking for a writer-editor with a degree in journalism or communications and 3 years of professional experience. Writes articles for our magazine, website and social media; helps to write and edit brochures and press releases; works with director to identify new communications channels. Essential skills are demonstrated writing and editing at a professional level, MS Office, including Word and PowerPoint. Must be comfortable working on a Mac and HTML experience is preferred.  Management experience a major asset.

Please submit resumes or requests for additional information to:

Karen L. Erickson

Associate Executive Director

Community Engagement

Alpha-1 Foundation

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 and physician outreach activities. Reporting to the Director of Family Outreach and Support, the Family Outreach & Support Coordinator will focus on five key initiatives. The position is 30 hours per week with duties performing primarily from the coordinator’s home with one or two monthly meetings in Tenafly, NJ. For more information about this job opening, click here.

Amyloidosis Research Consortium is seeking applications and nominations for their next Director of Development. The Director of Development position at ARC is an opportunity for an individual who wants to contribute to an organization at an exciting time in its development. Building on an established strategic planning process, the Director of Development will focus on growing ARC’s membership base of patient organizations and pharmaceutical and biotechnology companies, establish strategic alliances with other influential stakeholders in the disease community, broaden ARC’s role as a key thought leader on legislative and regulatory issues that impact the disease community and raise its international profile. Learn more about this job opening by clicking here.