Current Job Openings at Member Organizations
NORD’s membership is comprised of a diverse array of patient organizations. Currently we have 340 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.
| International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) The International Fibrodysplasia Ossificans Progressiva (FOP) Association (IFOPA) is hiring a Research Director! Since our founding in 1988, the IFOPA has fostered over $15 million in FOP-specific research grants, as well as built a variety of research tools and partnered with industry and academia to support the recruitment of a natural history study and 8 clinical trials. This role is an opportunity to develop and lead the research program in an ultra-rare but scientifically prominent disease with five clinical trials in progress and active research around the world. The Research Director cultivates strong relationships with key partners, including academic researchers, clinician scientists, scientific advisors, and industry partners around the world to speed the development of treatments and increase the understanding of FOP. The Director oversees all aspects of the IFOPA’s research portfolio, including the creation and execution of the research strategy, identification and support of partnerships and collaborations, management of research grant programs, expansion and utilization of IFOPA-developed research tools like the FOP Registry, and publication of IFOPA-led research. To see the full job listing and information on how to apply by May 1, please visit https://www.ifopa.org/careers |
The National PKU Alliance
The National PKU Alliance is looking for a Philanthropy and Communications Manager to help drive fundraising initiatives, donor engagement and communications efforts. This is a fantastic opportunity to make a meaningful impact in the PKU Community! www.npkua.org/careers
The United MSD Foundation
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The International FOXP1 Foundation – part time Executive Director
The International FOXP1 Foundation is excited to announce the search for a part-time Executive Director to lead our mission. This pivotal role will guide our efforts in advancing research and supporting individuals affected by FOXP1 syndrome. If you are a visionary leader passionate about making a difference, we invite you to apply. For more details, please visit https://www.foxp1.org/careers.
| The Amyloidosis Research Consortium (ARC) – Director of Development The Amyloidosis Research Consortium (ARC) is seeking a Director of Development to lead its fundraising efforts and advance its mission of improving and extending the lives of those with Amyloidosis. This full-time, fully remote role offers a $115,000 – $125,000 salary and a competitive benefits package, including generous PTO, health, dental, vision, life, and disability insurance. Reporting to the CEO, the Director will oversee major gifts, annual campaigns, planned giving, and grants, building and expanding donor relationships with individuals, corporations, and institutions. The ideal candidate is a strategic, hands-on leader with 7+ years of nonprofit development experience, a proven track record in fundraising growth, and a commitment to financial sustainability. This is an exciting opportunity to drive impact in a rapidly growing organization at the forefront of amyloidosis research, policy, and patient support. Applications are reviewed on a rolling basis—apply today through our career page here: https://ats.rippling.com/arc/jobs. Please share with your network if you know someone who might be a great fit!
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Immune Deficiency Foundation – Communications & Marketing Manager
The Communications & Marketing Manager is responsible for the management, development, and creation of communication materials related to organizational growth, advertising, promotion, and campaign management. This position will be required to work independently and collaboratively on multiple initiatives. This position is remote with occasional travel for conferences and periodic travel to the IDF offices in Hanover, MD. Apply here: https://primaryimmune.org/careers
United Porphyrias Association – Legislative Advocacy Manager
The United Porphyrias Association is seeking a part-time Legislative Advocacy Manager. The Legislative Advocacy Manager will lead and coordinate legislative and policy advocacy initiatives related to the porphyrias and the broader rare disease community. This role will focus on fostering partnerships, engaging stakeholders, and advancing policy priorities that benefit the porphyria patient community. This part-time position can be home-based or performed at UPA’s office in Bethesda, MD. Please submit a cover letter and resume to [email protected]. Applications are reviewed on an ongoing basis.
United Porphyrias Association – Administrative Assistant
The United Porphyrias Association (UPA) is seeking a full-time Administrative Assistant to support non-profit patient advocacy. This role will focus on coordinating logistics and supporting program staff by performing general administrative tasks, coordinating office logistics to ensure team is able to fully support our mission of improving the quality of life of the porphyria patient community and relentlessly focusing on advancing disease awareness, research, and therapies in all the porphyrias. This full-time position will be performed at UPA’s office in Bethesda, MD. Please submit a cover letter and resume to [email protected]. Applications are reviewed on an ongoing basis.
CureARS and Channeling Hope Foundation, both CZI Rare as One Grant Awardees – Operations Manager
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The National Niemann-Pick Disease Foundation
The National Niemann-Pick Disease Foundation is seeking an experienced and passionate leader to serve as its next Executive Director and guide the community through this new post-approval landscape of commercially available treatments.
Learn more about their career opportunities here!
National Tay-Sachs & Allied Diseases Association – Manager of Development (Fundraising)
NTSAD’s Manager of Development is responsible for the fundraising efforts of the organization. This role reports to the Chief Executive Officer, and collaboratively interacts with NTSAD’s major donors, staff, Board of Directors, committee members, and members of the rare disease community. The Manager’s primary responsibility is oversight of all fundraising operations to meet or exceed the organization’s annual revenue budget while adhering to the expense budget. Paramount to this position is striving to identify and secure new revenue sources while expanding existing sources to meet or exceed goals. The Manager of Development works cross-functionally with other staff members to align fundraising efforts with organizational objectives. To articulate the need for organizational support, the Manager of Development stays apprised of all current NTSAD research projects, advocacy initiatives, and family services programs and activities. More information here: https://ntsad.org/wp-content/uploads/2024/10/NTSAD-Manager-Development-job-description.pdf