The work of the VHL Alliance wouldn’t be possible without the help of our fabulous volunteers. There are many ways to get involved: Below is a list of some ways that you can help. Please consider sharing your energy and expertise!

For more information about any of these volunteer opportunities, please contact the VHL Alliance and complete:


Support the VHLA by creating your own event or join one that is already planned. Host a bake sale, join Team VHL in a run/walk, create a virtual event through VHLA’s Peer to Peer fundraising page, or come up with something unique

Regional Ambassadors

The VHLA Ambassador plays a crucial part in the work of the VHL Alliance, dedicated to those affected by VHL through education, support, and research. They help connect patients and caregivers to resources, raise awareness, and act as a mentor for newly diagnosed patients.

Board Member

Board members help steer the ship that is the VHL Alliance. They help with a number of tasks including fundraising, marketing, communications, social media, and finances. Members may serve for two terms (three years per term). Meet our current Board members.

CCC Liaison

The CCC Liaison is a patient (or caregiver) that receives care at a CCC, gathers patient feedback, and works with the CCC leadership team to help develop improvement plans. Check with the VHL Alliance to see if there is an opportunity to serve as the Liaison at the CCC where you receive care.

Committee Member

VHLA committees work together with staff and board members to build awareness, increase fundraising efforts, engage patients, friends, and family, and help manage finances.

General Volunteer

If you are not sure what position is best for you, you may be interested in starting as a general volunteer. General volunteers provide an extra hand on various projects throughout the year. Examples of past volunteer involvement include: helping individuals with low/no vision participate in the patient databank, helping design social media campaigns, calling constituents to encourage participation in annual family weekends, etc.  Access and complete the volunteer form to indicate your interest and a VHLA staff member will be in touch with you.