The VHL Alliance is a Boston-based 501(c)3 non-profit organization. The executive director reports to a 16-person board of directors representing various regions. Along with a strong commitment to VHLA’s mission and vision, board members bring subject matter expertise to their roles. The board convenes 12 times per year and hosts an annual meeting and fundraiser. In addition, there is a Research Council and Clinical Advisory Council comprised of field experts.
The Alliance has a dedicated, professional staff of three working in advocacy, education, advancement, events, and communications. The staff is supported by several volunteers based across the country. The current Executive Director is retiring and will remain on for a transition period.
VHLA’s annual budget is approximately $1.4 million. The organization is largely funded through private donations, corporate sponsorship, and event revenue.
Executive Director Responsibilities
The next executive director will need to address the following key leadership opportunities:
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
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.
About VHL Alliance
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). VHL is an inherited multi-system disorder characterized by abnormal growth of blood vessels (angiomatosis) in certain areas of the body including eyes, brain, spinal cord, kidneys, and adrenal glands.
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.