Overview
Research Programs Associate Jobs in Quincy, MA at National Organization f
About NORD
The National Organization for Rare Disorders (NORD) is the leading independent nonprofit organization advocating for and supporting individuals and families affected by rare diseases. Our mission is to drive research, advance evidence-based policies, and provide resources that improve the lives of the 30 million Americans living with a rare condition.
Join our team and be part of a collaborative, mission-driven organization dedicated to making a difference. We offer a competitive compensation and benefits package, remote work options, and opportunities for career growth.
Learn more at www.rarediseases.org.
About the Role
We are seeking a Research Programs Associate to support the operations of NORD’s research initiatives, including the Patient Registry Program and Jayne Holtzer Research Grants Program.
NORD’s IAMRARE® Patient Registry Program empowers patients and advocacy groups to launch high-quality registries that capture critical data on rare diseases—helping researchers understand disease progression and ultimately drive drug development. The Jayne Holtzer Research Grants Program provides critical early-stage funding to scientists working on groundbreaking rare disease research. These grants have accelerated the development of new diagnostics and treatments, with some projects leading to FDA-approved therapies—bringing real hope to patients and families who previously had none.
This position will collaborate with internal teams, researchers, and rare disease organizations to ensure successful program execution. This is a fully remote position based in the U.S.
Essential Duties and Responsibilities
Patient Registry Program Support
Assist in planning, implementation, and post-launch support for registries.
Coordinate with internal teams and clients to develop and manage registry content.
Support clients with Institutional Review Board (IRB) submissions and regulatory compliance.
Train stakeholders on registry platforms and provide ongoing technical support.
Research Grants Administration
Assist with grant administration, tracking progress, and ensuring compliance.
Support grant-related communications, publications, and reporting.
General Research Support
Participate in multi-stakeholder collaborations to advance rare disease research.
Maintain and improve standard operating procedures (SOPs) for research program management.
Provide administrative and project management support for various research initiatives.
Perform other duties as assigned to support the success of NORD’s research programs.
Education/Experience
Bachelor’s degree in science, research, health, or a relevant field is required.
At least 3-5 years of experience working in research with human subjects and project management experience is required.
Experience managing multi-stakeholder projects in a research, healthcare technology or academic research environment is required.
Experience working with research or healthcare databases, such as RedCap and SPSS is required.
Experience managing grants and working with IRB’s and/or ethics committees is preferred.
Certification from ACRP or SOCRA is preferred.
Knowledge, Skills and Abilities
Excellent verbal and written communication skills.
Superior organizational and time management skills.
Empathy and a commitment to supporting the rare disease community.
Ability to work independently as well as collaborate with team members.
Excellent technical computer skills, competent with Microsoft Office, Teams, project management software and database software
Why Join Us?
Make a meaningful impact in the rare disease community.
Work in a flexible, fully remote environment.
Grow professionally in a collaborative and supportive culture.
Competitive salary & benefits, including medical, dental, vision, life and disability insurance, retirement plan with a 5% company match, access to LinkedIn Learning for professional development, and generous paid time off.
Equal Employment Opportunity (EEO) Statement
NORD is an equal opportunity employer. All applicants will be considered for employment without attention to race, color, religion, sex, sexual orientation, gender identity, national origin, veteran or disability status. Reasonable accommodation may be made to enable individuals with disabilities to perform the essential functions of this position.
Apply Today!
Ready to help transform the future of rare disease research? Apply now!
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Title: Research Programs Associate
Company: National Organization f
Location: Quincy, MA
