Washington, D.C.

Chief Executive Officer – Hemophilia Federation of America

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Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorder community. We work in conjunction with other national and state organizations on behalf of families living with bleeding disorders. We are seeking a strong seasoned and innovative leader who understands the importance of advocacy and who will have the opportunity to grow this already influential organization to have a deeper and broader impact.

About Our Organization

Formed in 1994, Hemophilia Federation of America (HFA) was incorporated and began working as a voice and advocate for the bleeding disorders patient and caregiver community. We are a community-based, patient centered organization committed to championing the needs of families living with debilitating bleeding disorders. We advocate for safe and effective therapies and quality, affordable health coverage. We provide education that is timely, relevant, engaging, and intentional tor our bleeding disorders community. We seek a better quality of life for all persons with bleeding disorders.

Anational organization, HFAis headquartered in Washington, DC, and partners with over 50 state and local community-based affiliated organizations made up of men, women, children, moms, dads, siblings, grandparents, and friends impacted by bleeding disorders. Additionally, we work with healthcare providers, therapy providers, specialty pharmacies, donors, and insurers, who play a significant role in patients’ and caregivers’ lives.

What We Do

  • Provide leadership in monitoring, evaluating, and responding to the actions of government, the pharmaceutical and insurance industries, and health care providers.
  • Champion the ongoing ethical responsibility of community, government, the pha rmaceutical and insurance industries, and health care providers.
  • Improve awareness and education of bleeding disorders and related medical conditions with a holistic approach providing tailored, accessible content for our bleeding disorders community.
  • Advocate for safe and effective therapies and quality, affordable health coverage.
  • Foster active collaboration with other organizations that share similar goals.

HFAis  governed by an 11-member board of directors and has a  budget of approximately $6M. Current staffing consists of 28 dedicated professionals, including the Leadership Team which is made up of the CEO and the 4 Vice Presidents that report to that position. The Board has secured the services of a professional interim executive to provide leadership during the transition period. For more information, please visit https://www.hemophiliafed.org

The Position

Reporting to the Board of Directors, the Chief Executive Officer is responsible for strategy development and providing overall leadership and management for the organization. The CEO plans, directs or manages the senior leadership team across the organization to ensure advocacy, education programs and services, research, as well as development, finance, marketing, communications, IT, HR, and administration activities are organized for optimal success. The CEO will maintain a persistent laser eye toward results that support HFA’s vision, mission, and key objectives.

The CEO will act as a key advocate and spokesperson for the organization to advance public dialog on key issues to the bleeding disorders community with key senior stakeholders in similar agencies and regulatory, government, and industry leadership. This position requires a leader with a solid work ethic, commitment to lead via servant leadership, and willingness to learn and grow with the changing organization.

Key Responsibilities

  • Develop, implement, and communicate HFA’s strategic vision in conjunction with the Board, staff, and members
  • Effectively lead and manage the organization, including strategic planning, evaluating priorities, and identifying emerging issues
  • Steward the fiscal operations, including managing the budget, reporting, and fundraising
  • Report to and support the Board of Directors, and create strong working relationships with the Board, staff, and members
  • Act as the face and voice of HFAand provide consistent, responsive, and effective internal and external communication

Immediate Priorities for the Next CEO

The CEO provides leadership both inside and outside the organization, continually increasing HFA’s mission impact. The organization’s near-term priorities for the next 12 – 18 months include:

  • Develop an understanding of the organization’s business model and its external landscape, which is complicated and changing
  • Become the face and voice of HFAand develop relationships with the board, staff, members, and stakeholders
  • Explore diversifying funding sources
  • Stabilize and build the staff infrastructure
  • Manage a strategic planning process for the organization and our priorities moving forward, then develop a business plan to operationalize the strategic plan
  • Support the shift to a different board structure
  • Partner with the Board to define what we bring to the community
  • Implement the work identified in the DEI assessment
  • Continue the work of building trust internally and externally

Experience and Attributes

Successful candidates for this position will demonstrate an ability to quickly integrate into the organization and community. HFAis seeking candidates with a variety of experience and attributes with emphasis on the following:

  • Proven leadership and management experience in an organization with a similar mission and comparable size, budget, and staffing
  • An inclusive, visionary, inspirational and transparent leader who is able to balance strategy and action
  • Exceptional written and oral communications skills and style, including listening, articulating key messages, and a polished executive presence
  • Experience managing change, developing a positive organizational culture, and ability to establish trust
  • Deep understanding and commitment to DEI, and experience incorporating it into all aspects of an organization
  • Proven relationship building ability, exceptional interpersonal and collaboration skills, coalition building
  • Strong understanding of fiscal management, budgeting, and operations, including responsibility for developing and managing a budget
  • Experience supporting a board of directors in its governance role, fostering its ongoing development, and keeping it informed
  • Willing and able to have hard conversations if necessary
  • Personable with a sense of humor, willingness to learn and grow, and support staff in their professional development goals
  • An understanding of the health environment and/ or rare diseases helpful
  • Willingness and ability to travel approximately 12 times a year
  • Bachelor’s degree or equivalent experience required

The organization is headquartered in Washington, DC. There is a possibility to work from a different location. There will be times when the CEO needs to physically be in Washington, DC.

Salary is commensurate with experience and is expected to be in the range of approximately $ 175,000 to $200,000.

Equal Opportunity Employer

HFA is an Equal Opportunity Employer committed to diversity in the workplace.

Application Process

To apply, upload a Microsoft Word or Adobe PDF resume and cover letter, which conveys your interest in this leadership opportunity, to our Application Form. For other inquiries, contact Adrienne O’Rourke. Resume reviews begin immediately.

If you are a qualified candidate with a disability, please also email Adrienne O’Rourke if you require an accommodation to complete your application.