Research Programs Associate

About NORD 

The National Organization for Rare Disorders (NORD) is the leading independent nonprofit organization representing all patients and families affected by rare diseases. Come join our team and be part of the transformation and acceleration of research, and the development of evidence-based policy, care support and awareness campaigns to improve the lives of the 30 million Americans impacted by rare diseases. We offer a competitive compensation and benefits package along with a collaborative work atmosphere, opportunities for career growth and development, and flexible telecommuting options. Learn more at www.rarediseases.org.

Overview of the Research Program and Position Summary 

The Research Program Associate will work collaboratively with the Director and Associate Director of Research Programs in supporting the operations of NORD’s research programs, including the Patient Registry and Research Grants programs.

NORD’s research portfolio includes several programs and activities intending to address gaps in knowledge and/or capacity to accelerate research and the development of therapies to improve the health and wellbeing of those living with rare conditions.

For example, NORD’s IAMRARE® natural history studies and research collaboration platform allows patients and organizations to inform and shape medical research and translational science for rare diseases by launching high-quality, customized registries to collect the data needed to define the natural progression of their disease – ultimately advancing product development.

NORD’s Jayne Holtzer Research Grants Program provides seed grants to academic scientists for translational or clinical studies related to the development of potential new diagnostics or treatments for rare disease. In at least two cases, these grants have resulted ultimately in FDA-approved treatments for patients.

NORD’s research program activities include participation in several multi-stakeholder collaborations and federally-funded grant projects where the aims are aligned with NORD’s mission and where rare disease patients and caregivers are critical to the success of the project.

This position will be fully remote.

Essential Duties and Responsibilities 

Support all aspects of the Patient Registry Program including onboarding, implementation, project launch and ongoing support:

• Support clients in project planning and management from design through project implementation and post-launch support
• Work collaboratively with IT and other departments on the development and implementation of new registries
• Assesses and mitigates risks associated with project implementation including ensuring project timelines and deliverables are met
• Coordinate and assist with the administration of project meetings
• Provide support on Registry development including working closely with clients to develop their protocols, content for Registry, feature specifications, registry promotion and evaluation
•  Support clients in the development and submission of content for IRB review
• Assist with development, testing, and launch of surveys, and supports subsequent revisions
• Train clients and their study staff on using Registry and its features
• Assist with the creation and implementation of standard operating procedures (SOPs) for client services including implementation, evaluation and customer support
• Create and maintain Registry Program resources and tools
• Assist with clients’ inquiries and resolves issues; liaise with IT and other staff as necessary 

Support management of Research Grants:

• Assist with ongoing administration over the life of the grant
• Support the communication and publications resulting from grants and further developments to the program
• Support project reports as a part of grant commitment

Perform other duties and functions as assigned

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
• 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 the Association of Clinical Research Professionals (ACRP or from the Society of Clinical Research Associates (SOCRA) is preferred

Knowledge, Skills and Abilities 

• Excellent verbal and written communication skills
• Superior organizational and time management skills
• Demonstrable empathy for people with rare diseases
• 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
• 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.

Working Conditions

This position is fully remote with a preference for candidates based out of Danbury, CT, Washington, DC or Quincy, MA.

Reasonable accommodation 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.