History

Founded by Joyce Graff, Susan Warnick, and Peggy Marshall (two VHL caregivers and a VHL patient) the VHL Alliance (VHLA) was incorporated (as the VHL Family Alliance) by the Commonwealth of Massachusetts on April 28, 1993. The organization was awarded 501(c)(3) nonprofit status on July 1, 1993, the same year that the VHL gene was identified.

Feelings of isolation among patients and their families, particularly during the pre-internet era, was the primary motivation for forming the VHL Alliance. Creating a sense of connection helped relieve some of the stress of the unknown as well as the frustration caused, in part, by the lack of knowledge of healthcare professionals about this rare condition. As such, the organization made its mission to connect and educate VHL patients and their families while providing information to healthcare providers to advance VHL diagnosis, treatment, and quality of life.

More than twenty-five years of work has shaped and advanced the VHL Alliance into the pre-eminent resource for patients, caregivers, researchers, and the medical community. In addition, the VHL Alliance is part of an international network serving an estimated 15,000 people worldwide, in 108 countries.

In late 2011, the VHL Alliance initiated its first major leadership transition with the replacement of its Founding Director, Joyce Graff. The change offered an opportunity to embark on a strategic planning process that included reviewing the organization’s vision, mission, strategies, and tactics. The resulting blueprint was documented as a guide for the VHL Alliance.

Execution of the strategic plan was accompanied by a maturation of the VHL Alliance along with strengthening of the Board of Directors, growing programmatic offerings, focus on research, and increasing revenue. The success of the VHL Alliance’s first strategic plan of 2013-2016 demonstrated the importance of a defined direction. Subsequent strategic plans (2016-2018, 2018-2020, 2020-2022) were developed and successfully implemented. 

With the start of FY2023, the board, volunteers, and staff are once again working using a new strategic plan. This plan builds on what has already been accomplished and utilizes the momentum gained from previous years. Program and service expansion will be in line with the VHL Alliance’s mission: “Improving quality of life and health outcomes for VHL patients, families, and caregivers with inclusive community building, connections to excellent education and treatment options, and advancements in medical research.”