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Openings from Member Organizations

NORD’s membership is comprised of a diverse array of patient organizations. Currently we have 280 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.

The Moebius Syndrome Foundation is looking to contract with an experienced conference and meetings planner to assist on a part-time basis for projects through July 2022. The main responsibility for this role is to manage the logistics for the Moebius Syndrome Foundation Conference, which is held every two years. The next event is in July 2022 and is being held in Atlanta, Georgia. Learn more.

The Director of Science and Policy Communications is responsible for protecting the integrity and enhancing the accessibility of information shared by IDF while ensuring IDF stays on the leading edge of innovative treatments and medical advancements. This position oversees written content development for IDF publications, online articles, and reviews communications to support the advancement goals of the organization. This position has supervisory responsibility and manages two other communications positions. The ideal candidate will have a Master’s degree or equivalent experience in communications, scientific writing, and publication management in addition to healthcare communications and nonprofit management experience. While this position has the option to be fully remote, we prefer candidates on the East Coast. Learn more.

The Digital Marketing Manager develops and implements strategies that will engage community members through targeted digital marketing and communications initiatives involving new and developing media and technologies. The Digital Marketing Manager meets short-term and long-term goals from new and existing membership sources by developing “best practices” for digital marketing and communications across multiple platforms. The Digital Marketing Manager focuses on cultivating community members through email acquisitions; social media and mobile; third-parties; personal fundraising pages and is responsible for cultivating new member prospects through newly developing avenues. Learn more.

The Chief Scientific Officer will work closely with the CEO and STAR Advisory Board Chairs to manage existing research and mission programs while also providing the insight and support necessary to develop new care, support, and research programs. The Chief Scientific Officer provides program support for all scientific, translational and clinical projects and corresponding relationships with patients, families, industry, academic institutions, government agencies, and research donors to further the mission of the organization; manages the existing network of scientists in basic, translational and clinical science to enable them to advance new treatments; and works with the Centers of Excellence (COE) to develop and maximize impact of care for individuals with CMT. The Chief Scientific Officer will work from a home-based office. Learn more.

The APBD Research Foundation is seeking a part-time Communications and Development Manager (CDM) to help join our small team during this crucial period of growth in our community. Working remotely with key members of the board and staff, the Communications and Development Manager will oversee and manage a multi-channel organizational communications strategy and plan. In addition, the successful candidate will support the organization’s development initiatives, including fundraising campaigns and events, donor communications, and grant proposals. In general, 70% of time will be spent on communications duties and 30% on assisting with fundraising and development activities. Learn more.

National Tay-Sachs & Allied Diseases Association (NTSAD) is looking to hire a passionate, experienced, and inspiring Executive Director to lead the organization in this unprecedented time of progress and hope. The landscape for the patient community is rapidly evolving with increased and promising drug development activity. NTSAD’s next Executive Director will have the opportunity to navigate this exciting chapter, as clinical trials are underway for the first time, providing the tremendous potential to modify the course of these life-threatening and debilitating diseases. Learn more.

The Undiagnosed Diseases Network (UDN) Coordinating Center at Harvard Medical School is looking for a Nonprofit Consultant to play a key role in leading the strategic and operational planning process for a nonprofit (501(c)(3)) in support of the UDN. After plans are in place, the Nonprofit Consultant will oversee the incorporation of the nonprofit in collaboration with UDN clinicians, investigators, staff, and patient representatives. The Nonprofit Consultant will also be responsible for building strategic partnerships, preliminary staffing, fundraising, and expansion. This individual may have the opportunity to move into the Executive Director role of the newly formed nonprofit. Learn more.

TargetCancer Foundation is seeking an Associate Director of Research to join a small and focused team that is dedicated to developing initiatives that deliver patient impact while simultaneously driving rare cancer research forward. Learn more.

The Research Fellow is a key member of TMS staff, interacting with and supporting patients to advance patient-centered research efforts and develop written pieces that advances the organization’s strategic priorities. The Research Fellow’s primary responsibilities include:

Evaluate, analyze, and report results of interdisciplinary patient-centered research designed to provide a greater understanding of mast cell disease that may lead to enhanced health, clinical trials, and better quality of life outcomes.
Effectively translate and communicate research results and develop patient resources for patients and caregivers, including visual elements and simplified language that is easily understood and culturally competent.
Conduct team-based patient-centered research to develop physician database and develop productive collaborations with physicians, scientists from universities, industry, government and other stakeholders.
Learn more about the Role here.

atient education and support programs is vital for success in meeting our mission at TMS. Education is produced and delivered by multiple avenues including live and online learning, video, live and recorded education and programs. The Director of Patient Programs is responsible for leading the overall programmatic delivery of education and learning to our community for maximum impact. Reporting to the Executive Director and working closely with the Board of Directors and volunteers, the Director is responsible for the overall health communication activity, and education of patients. The Director will develop and implement appropriate strategies and methods to facilitate mast cell disease content and resources for a diverse audience of mast cell disease families and physicians across the country in order to help TMS fulfill our mission. Learn more about the Role here.

NTSAD (National Tay-Sachs & Allied Diseases Association) is hiring their first Director of Clinical and Research Initiatives to engage with key stakeholders and focus on the discovery and development of treatments, diagnostics and technologies for Tay-Sachs, Canavan, GM1 gangliosidosis and Sandhoff diseases. Learn More.