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.
What You Will Do
What You Bring
Nice to Have
Working Environment
This position is fully remote. Candidates must be able to work an Eastern Time schedule.
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.
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.
#LI
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is an independent patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD, along with its 350+ patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient support services.
NORD serves all stakeholders in the rare disease community, including patients and their families, patient organizations, researchers, medical professionals, medical students, and companies developing orphan products.
NORD also works closely with many government agencies, most notably the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).
All NORD programs are focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases.
NORD is the official U.S. sponsor of Rare Disease Day, an international observance day held on the last day of February each year. Its goals are to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. To learn more, visit rarediseases.org/rare-disease-day.
To learn more, please visit the NORD website at www.rarediseases.org. You can also follow NORD on X at @RareDiseases.
