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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have over 270 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

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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Friedreich’s Ataxia Research Alliance is hiring a Research Portfolio Manager! Work with FARA’s Executive Director and staff to implement the scientific strategy and operational programs that support the advancement of research and drug development for Friedreich’s Ataxia (FA).
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Work with the Executive Director and staff of Friedreich’s Ataxia Research Alliance (FARA) to implement the scientific strategy and operational programs that support the advancement of research and drug development for Friedreich’s Ataxia (FA). Work with all stakeholders (industry, academia, patient families, donors and government partners) to achieve this goal through facilitating collaboration, sharing of research tools and ideas, and using the FARA grants program to maximize impact of FARA’s research and clinical resources. Direct and manage specific FARA-led efforts to develop tools to accelerate research such as development of new disease models, biomarkers and endpoints. Help FARA organize scientific workshops and meetings, and represent FARA and the FA community at scientific conferences. Participate in the review and oversight of grant applications and awards to external researchers.

The successful candidate will have relevant professional experience in research and/or drug development for FA or a related disease (mitochondrial diseases/neurodegenerative diseases/cardiac diseases), have an understanding of the process of basic research, drug development and clinical research, have excellent interpersonal/ teamwork skills, and demonstrated interest in the development of treatments, preferably for rare diseases. The candidate will be provided the opportunity and latitude to show initiative, acquire new skills and grow professionally.

Be sure to email a cover letter and resume to
Include “Research Portfolio Manager” in the subject. Please include salary requirements. Application deadline: August 15, 2018
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The PATH for PWS Study Coordinator is a unique opportunity for a highly motivated professional to accelerate research into the natural history of Prader-Willi syndrome (PWS), a rare neurodevelopmental disorder, and lay the groundwork for understanding the impact of novel therapies for the PWS community. The PATH for PWS Study coordinator will join a dedicated team at the Foundation for Prader-Willi Research (FPWR), a nonprofit whose mission is to eliminate the challenges of PWS through the advancement of research and therapeutic development. 
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The PKD (Polycystic Kidney Disease) Foundation is seeking a Chief Operating Officer, a relatively new position that will report to the Chief Executive Officer.  Peers to this position consist of the Chief Scientific Officer and the Chief Development Officer. The COO will work closely with the CEO, the Board of Directors, peers and staff to support the mission and vision of the PKD Foundation and positioning the organization for growth.

This individual will deliver results through inspiring leadership and the day-to-day management of talent, including five direct reports and approximately 35+ indirect and other staff with responsibility for the following functionalities:

  • Finance/Accounting
  • Chapter Operations (Note: 60 chapters across the US)
  • Information Technology
  • Human Resources
  • Administrative support
  • Patient Support staff
  • Database Support staff

Learn more about this job opportunity.