Research Programs Associate

National Organization for Rare Disorders
Connecticut, United States
Salary Not specified
Closing date
Oct 29, 2021

View more

Position Type
Programs, Other Programs
Advocacy, Research
Employment Type
Full Time

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. Follow NORD at and on Twitter at @RareDiseases.        

Overview of the Research Program and Position Summary

The Research Programs Associate will work collaboratively 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.

Essential Duties and Responsibilities

Support the Patient Registry Program from, onboarding, implementation, project launch and ongoing support:

  • Supports customers in project planning and management from design through project implementation and post-launch support
  • Works collaboratively with I.T. 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
  • Coordinates and assists with the administration of project meetings
  • Provides support on Registry development including working closely with customers to develop their protocols, content for Registry, feature specifications, registry promotion and evaluation
  • Supports customers with IRB-related content
  • Assists with development of the surveys (compilation of surveys in registry upload format), test, launch and support revisions
  • Trains customers and their study staff on using Registry and its features
  • Assists with the creation and implementation of standard operating procedures (SOPs) for product development, implementation, evaluation and customer support
  • Creates and maintains Registry Program resources and tools
  • Assists with updating surveys in customer registry
  • Assists with customer inquiries and resolve issues; liaise with IT and other staff as necessary
  • Supports the assessment of customer requests for feature developments and assist with Registry Feature Pipeline
  • Schedules and attend presentations for the patient registry platform

Supports management of Research Grants:

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

Perform other duties and functions as assigned


Bachelor’s degree in science, research, healthcare IT or a relevant field

At least 3-5 years of relevant program and project management experience

Experience managing multi-stakeholder projects in a research, healthcare technology or academic research environment required

Proficiency with project management methodologies such as Waterfall or Agile 

Experience working with research or healthcare databases preferred

Experience managing grants and working with IRB’s and/or ethics committees preferred

Knowledge, Skills and Abilities

Excellent verbal and written communication skills

Superior organizational and time management skills

Demonstrable empathy for people with rare diseases

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.


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