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.
Executive Director – The Mowat-Wilson Syndrome Foundation
The Mowat-Wilson Syndrome Foundation has an opening for an Executive Director. The Executive Director will report to the Board of Directors and will have overall strategic and operational responsibility for Mowat-Wilson Syndrome Foundation’s programs, staff, and execution of its mission. Knowledge of the rare disease community would be preferred. This is a part time, remote position. Please email debyc@mowat-wilson.org your resume to apply. Learn more.
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.
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