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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.

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.

Neurofibromatosis Northeast (NF Northeast) seeks a dynamic Executive Director who will take this beloved and vibrant nonprofit to its next level. The new leader will be replacing the founder of NF Northeast, who is retiring from the position. Learn more.

The Pulmonary Hypertension Association is seeking advocacy/policy professional who will work collaboratively with the Sr. Director, Advocacy & Treatment Access to drive advocacy campaigns engaging people with this life-threatening lung disease. Learn more.

The Director of Research Engagement will be a key member of the Scientific Initiatives team, contributing to strategic planning and responsible for tactical implementation of research engagement initiatives.
AFTD identifies this as an essential area of growth for AFTD as a community-driven research funder with continued roots in direct community support. In addition to working with the FTD community, the Director of Research Engagement will partner or coordinate with others both internally and externally. Internally, this role will intersect with AFTD Programs, Communication, and Development to take on existing and emerging opportunities. Externally, this role will coordinate or collaborate with efforts of the FTD Disorders Registry, other non-profit organizations, academic natural history studies (ALLFTD and GENFI), and industry.
The Director must be a versatile and empathetic communicator, able to interface between clinical researchers, trial sponsors, and the community of those affected by FTD. They will bring or develop a deep understanding of industry-led clinical research and best practices for engagement with those affected by FTD. An ideal candidate will have direct experience in both patient-centered research tools, such as the development of patient-centered clinical outcome metrics, and a working understanding of the challenges with individuals suffering from cognitive or neuropsychiatric conditions. Learn more.

The Education Program Manager is directly responsible for the implementation and management of education initiatives. They will utilize these initiatives to increase outreach, education, and support to health professionals who provide care and services for those impacted by FTD. They will work collaboratively with AFTD’s support, volunteer, and advocacy teams as well as multiple external stakeholders. The efforts of the Education Program Manager will increase understanding of FTD disorders, advance early and accurate diagnosis, and improve care and services for those impacted. Learn more.

The Administrative Assistant – Research is responsible for supporting the day-to-day functions of the Research team, particularly the administration of AFTD’s research grant portfolio. They will be responsible for grant-related correspondence with applicants, reviewers, and institutions; scheduling and preparing materials for scientific panel reviews; assisting applicants and reviewers with answers to commonly asked questions; preparing award agreements and notifications according to established protocols, and assisting in the development and distribution of funding opportunity announcements and other promotional materials to raise awareness of AFTD grant programs. The Administrative Assistant – Research will also have primary responsibility for maintaining AFTD’s research contact and grant record database in Salesforce. They will further support the Research department by carrying out organizational and administrative tasks necessary to AFTD-sponsored scientific meetings and conferences, creating call notes and meeting minutes, managing travel arrangements and expense reports for research department staff, and helping to maintain the research file infrastructure. They will also carry out additional tasks as requested in support of the team and will act as a member of the organization’s administrative resource pool, supporting various administrative projects as well as event and meeting planning as requested. Learn more.

PWSA | USA is hiring a full-time remote Marketing and Communications Specialist to join their team. The Marketing & Communications Specialist is responsible for developing compelling content and executing impactful messaging that engages the PWSA | USA community. This individual works within the Marketing & Development Department to bring life and voice to our brand by telling powerful stories that showcase the organization as a vital resource with significant community impact. The ideal candidate is a dynamic, digital/tech savvy, creative team member who is passionate about building a brand and culture of service to community. The role encompasses content development, graphic design for digital, print, and web media, editorial support throughout the organization, as well as leadership in the development of year-round organizational communication strategy and input into overall Advancement efforts. Learn More.

The Mowat-Wilson Syndrome Foundation is ready to hire its first Executive Director. Interested parties can contact Deborah Curry at [email protected]

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.