Job Type

Full Time






999 N. Capitol Street, NE
Suite 201
District of Columbia
United States


MISSION STATEMENT:  Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community. 

HFA VALUES: Hemophilia Federation of America is a thriving nonprofit organization with a focus on advocating for the community to which it serves. We believe in the following values and look to all employees to act as servant leaders to engage with:

  • Integrity and Respect.  We act with honesty and fairness. Diversity is embraced at HFA and we promote inclusion of people and ideas and consider the perspectives of others.
  • Community. We are “high touch”. We take every community member seriously and devote the time needed to ensure they feel valued and heard.
  • Creativity and Flexibility. We see HFA as a sailboat. As needed, we adjust course to capitalize on new ideas and focus on the most critical priorities to meet our mission.
  • Fun. We celebrate successes and work as a team on our journey to achieve the mission.  We work hard and play hard!

JOB DESCRIPTION: The Research Director will create and implement the organization’s current and long-term community centered, focused and driven research aimed at improving the lives of people with bleeding disorders. Projects and plans are aligned with the vision, mission, objectives and goals of the organization. Acting as a key research strategist as well as relationship builder, the Research Director will drive and build internal/external awareness, create new research opportunities and support for the organization’s research initiatives. Must be passionately committed to building a research practice that is focused on patient reported data and the critical importance of the natural history studies of patients.


  • Ensures strategic research initiatives are diversified and implementable with focus on improving the lives of community families and meeting HFA’s vision, mission and objectives.
  • Builds bridges and collaboration with researchers/research community (academic and other) globally to enhance the organization’s practices.
  • Evaluates and monitors current and emerging research trends with focus on being a leading expert organization in patient reported research best practices.
  • Strives to continually improve and build loyalty and trust within the community relating to HFA’s research efforts.

RESPONSIBILITIES: In this role, the Research Director will act as a leader within the HFA research team to carry out the duties required of the position. These duties include, but are not limited to:


  • Ensure the research team is focused on projects that benefit community families as well as meet HFA’s vision, mission and objectives.
  • Significantly contribute to develop and building the long-term research strategy within the organization.


  • Provide technical and scientific leadership as the organization’s senior research subject expert.
  • Plan/manage strategic projects relating to HFA’s research initiatives, including online registry for data collection.
  • Ensure ongoing and timely collection and reporting/communications of HFA research initiative metrics, data, results and/or outcomes.
  • Work with leadership in other functional areas to execute on research findings in advocacy and programming efforts to the benefit of the bleeding disorders community.
  • Ensure adherence to professional standards and ethics of research.
  • Evaluate research tools and emerging technology.
  • Manage ongoing professional development of research area team.
  • Ensure staff and membership have environment of creativity and open exchange of ideas.


  • Maintain an eye toward growth/meeting ongoing needs of research team.
  • Work with leadership to set annual research financial goals; steering team to achievement.
  • Develop, manage and provide ongoing oversight of research area budget.


  • PhD preferred.
  • Five-plus years’ experience in research including one or more years in supervisory role.
  • Deep understanding and passion for patient reported research.
  • Prior PCOR/CER experience a significant plus.
  • Strong analytical skills, including expertise in the modeling and analysis of data.
  • Demonstrated record of initiative, problem solving, and adaptability.
  • Ability to appropriately communicate sensitive information.
  • Demonstrated excellence in organizational, managerial and communication skills.
  • Prior experience successfully managing multiple projects.
  • Experience in project management, implementation, and evaluation.
  • Positive servant leader attitude and ability to work collaboratively on a high-performance team.

Equal Opportunity Employer committed to diversity in the workplace. 

Professional Level


Minimum Education Required

Doctorate (PhD)

How To Apply