Executive Director, VHL Alliance

Location: Washington, DC area preferred • Hybrid remote
Wage Category: The salary range is $100,000 to $125,000, Full Time. Salary is commensurate with experience.

The VHL Alliance seeks a passionate and experienced leader that embraces the values and mission of the Alliance. The new executive director must be a strategic thinker, persuasive communicator, compelling fundraiser, and excellent relationship builder. Candidates may come from a non-profit, public sector, philanthropic, or business background. The ideal candidate will have worked in a similar setting and be excited at the prospect of growing the VHL Alliance and its overall impact and reach. An understanding of how non-profits operate is also important, as is experience working with an engaged governing board.

The VHL Alliance is a Boston, Massachusetts based 501(c)3 non-profit organization dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau (VHL).

Established in 1993, the Alliance is committed to distributing current information about VHL to patients, family members and physicians; promoting research activities and providing research grants; maintaining a research database; and enabling affected individuals to exchange information, resources, and mutual support through our vast networking programs. The Alliance helps establish standards for clinics that specialize in the diagnosis and treatment of VHL and provides referrals to designated clinical care centers in the United States and around the world. In addition, the Alliance offers telephone support, engages in patient and family advocacy, and assists in the development of local chapters. Furthermore, the Alliance provides a variety of educational materials in several languages. For more about the VHL Alliance, please visit www.vhl.org.

Principal Duties And Responsibilities

Reporting to the Alliance’s Board of Directors, the Executive Director oversees staff, engages with volunteers, and interfaces with the medical community. This highly visible position requires someone with strong interpersonal, management, communication, fundraising, and relationship development skills. Candidates must be passionate about the Alliance’s mission and vision, committed to diversifying the financial support base, and dedicated to building clinical and research partnerships. As the face of VHLA, the Executive Director will be tasked with serving communities and supporters around the world.

  • Articulate VHLA’s compelling vision to a broad set of constituents to increase stakeholder engagement and commitment
  • Ensure continued financial success and sustainability through effective fundraising and fiscal stewardship
  • Increase VHLA’s visibility and strengthen presence domestically and internationally
  • Support the Alliance’s continued growth and development through additional programming and support
  • Grow and diversify the Alliance’s revenue streams; creatively thinking about fundraising opportunities and resource allocation
  • Deliver strong advocacy and public relations to develop close working relationships with key government agencies, associations, media, philanthropic and pharmaceutical companies, etc.
  • Serve as an effective, outgoing spokesperson for VHLA with a diverse set of stakeholders
  • Inspire, advise, and support an engaged board of directors and advisory boards
  • Provide inspirational leadership and effective management of the organization


  • Undergraduate degree; MBA or MPA preferred
  • 5-10 years of effective leadership at a non-profit, mission-driven organization or public agency
  • Strong strategic planning skills and advanced organizational and communication skills
  • Proven track record of working with a board of directors and multiple stakeholders
  • Advocacy work experience
  • Experience generating funds, developing and implementing increased revenue generating programs, and balancing a budget
  • Ability to steward and support a diverse constituent body
  • Strong public speaking
  • Personal commitment to improving the health and quality of life for those impacted by VHL.

More Information

Please submit cover letter and resume, via Indeed or LinkedIn.

Preference will be given to candidates submitted by November 30, 2022.

The VHL Alliance provides equal employment opportunity (EEO) to all persons regardless of age, color, national origin, citizenship status, physical or mental disability, race, religion, creed, gender, sex, sexual orientation, veteran status, or any other characteristic protected by federal, state or local law. In addition, The VHL Alliance will provide reasonable accommodations for qualified individuals with disabilities.

Job Type: Full-time

Pay: $100,000.00 – $125,000.00 per year

Schedule: 8-hour shift

Supplemental pay types: Bonus pay

Work Location: Hybrid remote in Washington, DC 20024