Within the 21st century, the VHL Alliance envisions a cure for VHL.
The VHL Alliance (VHLA) is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.
The VHL Alliance (VHLA) is a 501c3 non-profit organization founded in 1993 by three families with VHL to share experiences, learn from one another, support one another, and help the doctors understand and treat VHL, and improve life for patients. Today, the VHL Alliance is the preeminent resource and clearing house of patients, caregivers, researchers and the medical community. VHLA is connected with approximately 90% of all diagnosed VHL patients throughout the world.
The VHL Alliance is about:
The VHL Alliance empowers patients and their health care teams to manage the health of the patients. Central to patient care is the VHL Handbook: What You Need to Know About VHL, written and published by VHLA. The Handbook, also available in a children’s version, is the only document in patient-accessible language that offers tips on diagnosis and treatment while providing constructive ways of living with VHL.
Having a strategic plan that clearly outlines the direction of an organization is important for success and growth. Using input from the entire VHL community (patients, caregivers, healthcare professionals, researchers), the board of directors engages in creating a Strategic Plan every 2-3 years. Implementation of the plan is monitored on a regular basis. At the same time, the VHL Alliance has the capacity to quickly respond to the needs of it constituency as well as changes thanks to the advancement of research.