Senior Research Programs Manager (Public Health)

Job Type

Full Time




55 Kenosia Ave
United States


About NORD

Established in 1983, the National Organization for Rare Disorders (NORD)® is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S. It provides programs of advocacy, education, research and patient/family services to improve the lives of all people living with rare diseases. NORD represents more than 280 disease-specific member organizations and partners with many other organizations in specific causes of importance to the rare disease patient community. Follow NORD at and on Twitter at @RareDiseases.

Position Summary

The Senior Research Programs Manager will work collaboratively with the Director of Research Programs to develop new research initiatives and manage and support the operations of the Research Department.

Essential Duties and Responsibilities

Manage a new program at NORD focused on utilizing and generating empirical evidence to drive patient-centered advocacy, lead special projects for the research department, conduct and oversee technical projects and data analysis, and contribute to scaling and expanding NORD’s research initiatives.

Specific tasks include, but are not limited to:

  • Contribute to and lead aspects of the development of new initiatives and special projects to support the vision of the department;
  • Contribute to and lead aspects of proposal development to support the expansion of the department’s activities;
  •  Develop and lead NORD’s new initiative to expand public knowledge of rare diseases and translate empirical evidence into real-world solutions for patients and families;
  • Identify external data sources and opportunities at NORD to collect data of interest and translate findings into publications, policy statements, and other dissemination materials;
  • Lead and oversee the development of analysis plans and data-driven outputs for the research department;
  • Conduct applied statistical analysis to identify data trends and solve complex analytical problems;
  • In collaboration with the research and technical teams, co-lead the design of the registry database structure, manage the flow of data capture and data export, and develop, implement, and maintain a data standards and ontology library;
  • Effectively liaise with community stakeholders (clinicians, researchers, regulators, patient groups, sponsors, etc) in coordination with the Director to build relationships, promote NORD’s research projects, and integrate new ideas and advances into NORD’s research operations;
  • Manage workflows, develop and implement project plans, and ensure that project timelines are met; lead internal and external meetings; and proactively identify and escalate potential issues;
  • Lead presentations and training sessions, as needed;
  • Represent NORD at academic and professional meetings;
  • Regularly monitor trends in the field to ensure that NORD’s programs continue to address current needs;

Perform other duties and functions as assigned.


Bachelor’s degree in a scientific or technical discipline, e.g. public health, bioinformatics, biostatistics, epidemiology, etc; Master’s degree preferred;

At least 5+ years of related work experience, with progressive leadership responsibilities, required;

Demonstrated program management experience;

Demonstrated professional experience and expertise with data management and analytics in the context of human-subjects research (academic, industry, or relevant clinical research organizations), including expertise with statistical data analysis software (SAS, STATA, etc);

Experience designing and managing research studies;  

Experience working on research projects with an advocacy and community health focus a plus.

Knowledge, Skills and Abilities

Excellent verbal and written communication skills;

Superior attention to detail, organization, planning, and time management skills;

Excellent technical and analytical skills; good troubleshooting and conflict resolution skills;

Self-starter with a strong desire to contribute and work collaboratively to achieve goals;

Demonstrable empathy for people with rare diseases.



Level of Language Proficiency


Professional Level

None specified

Minimum Education Required

No requirement

How To Apply

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