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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 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 IFOPA is seeking a highly motivated and passionate individual with interest and experience in serving a nonprofit organization. The Community Fundraising Manager serves FOP families, co-workers and friends conducting fundraising events to benefit the IFOPA. Activities include: administrative support, customer service, and fundraising and marketing support. This position also assists the Executive Director in national fundraising programs (e.g. vehicle donation and percent of sales programs) and national fundraising appeals (e.g. #GivingTuesday and FOP Awareness Day). This position reports to the Executive Director and is also responsible for developing and maintaining fundraising department budgets.
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The Fibrous Dysplasia Foundation is seeking a part-time (10 hours per week) bookkeeper with nonprofit bookkeeping experience. Flexible hours, remote position, immediate start.
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The PHACE Syndrome Community, Inc. (PSC), a 501(c)3 is seeking an Executive Director.  The Executive Director is responsible for overseeing the administration, programs and strategic plan of the organization. The position reports directly to the President with responsibility to the Board of Directors.
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The Ehlers-Danlos Society is hiring a full-time research and registry coordinator. The position is based in Baltimore, MD and has an immediate start.
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Aplastic Anemia and MDS International Foundation is seeking a full-time Senior Director, Patient Advocacy Programs. This person would direct the design, implementation, and evaluation of all patient-centric programs and services. The position will be responsible for supervising the Director of Patient Education, Information Specialist, and Program Support Specialist.
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The Fibrous Dysplasia Foundation is seeking a full-time Research Programs Manager to support, strengthen and grow the organization’s rapidly expanding patient registry, research grants program, and other innovative research initiatives. Remote position. Applications due by July 23rd.
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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 jen.farmer@curefa.org.
Include “Research Portfolio Manager” in the subject. Please include salary requirements. Application deadline: August 15, 2018
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