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
The IFOPA’s Marketing Manager is responsible for the development and coordination of marketing, branding and communications for our mission-driven organization funding research and serving those with an ultra-rare musculoskeletal disease – fibrodysplasia ossificans progressiva (FOP). This position supports the IFOPA’s programs, events and activities, working with internal and external partners including an external strategic marketing partner. Overall responsibilities include the collaborative planning, development, management, publication and reporting of organization marketing activities. This full-time remote position offers a competitive salary and benefits. Apply here.
Project 8p Foundation – Executive Director
Project 8p Foundation is a nonprofit biotech organization established in late 2018 to research a category of chromosomal disorders affecting the 8th chromosome. Project 8p is patient-led and takes a collaborative open science approach to research, with a commitment to develop research threads that can be used to develop treatments for 8p disorders and for other complex neurological chromosome diseases.
We seek a creative fundraising Executive Director with at least 10 years of work experience to advance medical and science-based initiatives to target, qualify, engage and, with the Board Chair, directly solicit individual, institutional donors and venture philanthropy solutions. In the process, the Executive Director will collaborate with the CEO to engage new Board members and to develop a range of funding and research partnerships.
This role will be based out of New York City. For more information and to apply, click here.
Project 8p Foundation – Science Director
Project 8p Foundation is seeking a highly motivated candidate to lead multi-faceted research programs in academia or industry to accelerate moving discoveries out of the lab and into clinical development across multiple therapeutic modalities (drug repurposing, gene therapies, etc). This individual will have the unique opportunity to devise high-level scientific strategies, plan and implement specific projects, and communicate results to all 8p stakeholders, including families.
For more information and to apply, click here.
Immune Deficiency Foundation – Regulatory Affairs Manager
The Immune Deficiency Foundation is hiring a Regulatory Affairs Manager. This position will monitor regulatory issues within designated areas and identify opportunities to engage with government agencies, including those within the Department of Health and Human Services (HHS), to advance the mission and priorities of the Immune Deficiency Foundation (IDF). Working with the Chief Public Policy Officer, this position will draft responses to a prescribed set of regulatory and reimbursement-related issues and represent the organization before state and federal agencies. This position will represent the organization to the public and interact closely with other staff members, particularly those involved in patient services, research, and communications. This position will work virtually but must be within commuting distance to Washington DC (DMV) and able to travel into DC for regular meetings. Apply here: https://primaryimmune.org/careers
United Porphyrias Association – Part Time Education and Community Engagement Coordinator
The United Porphyrias Association is looking for a part time Education and Community Engagement Coordinator! This vital position is responsible for creating and managing educational programs and events aimed at both patients and healthcare professionals. This role is crucial for promoting knowledge, building a supportive community, and advocating for better care through engaging educational initiatives and events. Please submit a cover letter and resume to info@porphyria.org. Applications are reviewed on an ongoing basis.