National Hemophilia Foundation

Community Research Network Manager

About The National Hemophilia Foundation (NHF)

The National Hemophilia Foundation (NHF) is dedicated to finding cures for inheritable blood disorders and to addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive. Learn more at Hemophilia.org!

About the Role

NHF is now looking for a Community Research Network Manager to join our team. As the Community Research Network Manager, you will oversee and direct a portfolio of initiatives focused on NHF’s Research Department’s vision of advancing person-centric research in the inheritable blood disorders community. This involves the oversight and direction of day-to-day operations of the Community Research Network (CRN) – which includes, but is not limited to, Community Voices in Research (CVR), a national registry which incorporates the lived experiences of persons living with inheritable bleeding disorders and their immediate family members.

As the Community Research Network Manager you will advocate the promotion of person-centric research through collaboration with key stakeholders in the community at a local, regional, national and if appropriate, international level. You will also support and collaborate on the development of communication strategies for related recruitment and engagement opportunities, projects, partnerships, and other core activities.


To qualify for this unique opportunity, our ideal candidate should have the following experience and education:

  • Master’s degree in data science, life sciences, public health, or health-related field with data science/management required. 
  • Minimum of 5+ years’ experience in research (inheritable blood disorders preferred), community engagement and communications or relevant field
  • Minimum 5+ years’ experience in project/program management and leading strategic initiatives
  • Experience/knowledge in databases and programs to hold and manipulate data (e.g., Excel, Qualtrics, REDCap) and statistical programs (R, SAS, SPSS).
  • Demonstrated expertise in expanding person/community engagement
  • Polished interpersonal and communication skills to interact and build relationships with NHF management and community members and other external stakeholders.
  • Highly proficient with creating reports using PowerPoint presentations and written reports.
  • Demonstrated ability to manage multiple projects and high-level, high exposure initiatives simultaneously working under tight deadlines and allocating resource required.
  • Demonstrated analytical, critical thinking, presentation, and negotiation skills a plus.
  • Fluency in Spanish and/or other languages preferred.
  • Completion of the Collaborative Institutional Training Initiative’s (CITI) and Good Clinical Practices (GCP) web-based training program concerning the protection of human subjects in research required. If not certified at time of employment, must complete within first 6 months of employment.
  • Proficient in Zoom, Microsoft Office Software, Excel, and must be readily adaptable to learning new software programs.

As a Community Research Network Manager, how results are achieved is paramount for your success and ultimately results in our success as an organization. In this role, your foundational knowledge, skills, abilities, and personal attributes are anchored in the following:

  • Performance Managing and Coaching – You set clear goals and expectations for staff; follow progress against goals; provide regular feedback; address performance issues promptly; foster learning and development; provide public and private recognition of staff accomplishments. 
  • Emotional Intelligence- you demonstrate the ability to interpret and actualize upon human emotions, both outwardly and inwardly while working with and/or managing others. You show competence in self-awareness, self-regulation, motivation, empathy, and social skills.
  • Relationship Building- You build both formal and informal professional relationships and maintain and fosters relationships within, across, and external to organizational boundaries. You often solicit advice, support, championship, sponsorship, and commitment that result in smooth transitions of change and the development of mutually acceptable solutions.
  • Working Strategically- You have a willingness to align priorities, planning and action to the organizations’ Strategic Objectives. You know how to identify patterns or connections between complex and ambiguous situations that are not obviously related and use them to come to conclusions about key issues that affect organization's priorities.

Where You Will Work:

This is a remote role and the candidate can be based anywhere in the U.S; the ideal candidate will have comfort working remotely with a team located throughout the U.S. This position requires regular travel*, to conferences, events, and meetings  as requested by the Director of Research.

*Our policy requires all staff to be fully vaccinated against COVID-19 for employees required to travel for their role. Therefore, to be considered, you must be able to meet this requirement within 30 days of employment unless you are requesting a medical or religious exemption.

What We Offer: 

At NHF our mission is to serve those affected by all inheritable bleeding disorders. We are committed to our employees as well as those we serve. To do so, NHF seeks and values those qualities, both visible and invisible, that makes individuals unique. We strive to be a safe place where regardless of age, color, disability, gender, gender identity, gender expression, family status, national origin, race, ethnicity, or sexual orientation; you are heard, empowered and valued because we truly believe that every person brings a unique perspective and experience to advance our mission.

In order to attract and retain a high performance team, we offer a dynamic and rewarding work environment. In addition to a competitive salary, NHF provides a comprehensive health and wellness program to eligible employees, family members and domestic partners. Our health and wellness programs include medical, dental, vision, prescription drug, preventative care, mental health services and an employee assistance / work-life balance program. We also offer:

• Full time employees: Three weeks (+) of vacation, four personal days, 12 sick days, 11 paid holidays, 1 Floating Holiday

• We also offer paid time off to Part-Time Employees 

• Paid Short-Term Disability insurance & Life Insurance 

• Pre-tax savings plan (including Flexible Spending Accounts and Commuter Transit Account)

• a 403(b) retirement plan.


In addition to the above benefits, we are committed to fair and equitable pay practices and base compensation on experience, education, revenue size and location-based cost of living calculations. For this position, NHF has set a starting base salary range $ 58,300-$70,500; open to negotiation and adjustment subject to geographic region, the candidate’s level of experience, skills, education and training.

Salary Description

$ 58,300-$70,500



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