Senior Research Assistant

About NORD: The National Organization for Rare Disorders (NORD) is the leading nonprofit organization serving the rare disease community in the United States. Join our team and be part of the transformation of science, policy, care, and awareness that is improving the lives of the 30 million Americans impacted by rare diseases. Learn more at www.rarediseases.org.

About the Role

NORD has an exciting opportunity for a Senior Research Assistant to work collaboratively with the Research Team to support and expand the IAMRARE Registry Program, which enables Patient Advocacy Groups to collect critical data to improve care and develop new and better therapies for the rare disease community. Patient-powered natural history studies are transforming how patients and caregivers shape medical research, and the IAMRARE platform makes it easy for organizations to launch a customized registry to advance the development of treatments.

Responsibilities

• Serve as a point of contact for registry partners and co-lead client onboarding meetings.
• Review study documents, protocols, and surveys during onboarding and after launch.
• Work with partners to build surveys on the registry platform and conduct QA and QC testing.
• Collaborate with partners on IRB study protocol and governance.
• Provide platform training, technical support, and follow-up to ensure complete, accurate data.
• Coordinate logistics, scheduling, and participant communications for workshops, webinars, and meetings.
• Prepare periodic reports on program activities and support interdepartmental projects.

Requirements

• Bachelor's degree in a relevant field (such as social sciences, life sciences, health sciences, education).
• At least 2 years of experience in a research environment.
• Experience with human subjects research and IRB processes.
• Client-facing or public-facing experience and excellent verbal and written communication.
• Strong attention to detail, organization, and project management, with the ability to work independently.
• Solid technical skills, including Microsoft Office, and the ability to learn new platforms.

Skills

• Experience with survey tools such as Qualtrics or SurveyMonkey, or coding in R or SQL (nice to have).
• Experience developing posters or presentations, or knowledge of rare diseases and patient registries (nice to have).

Schedule

This position is fully remote. Candidates must be able to work an Eastern Time schedule.

Working Environment

Essential functions are typically performed in a home office setting with a moderate level of noise. Reasonable accommodations may be made to enable individuals with disabilities to perform the essential functions of this position.