vhl alliance


The VHL Alliance relies heavily on volunteers. From the Board of Directors to FUNdraiser organizers, volunteers are at the core of our work.

Volunteers are involved in supporting and educating patients and caregivers. They also play a critical role in raising awareness within the healthcare community and the general public. 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 or complete this form and we will get back with you soon.


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! Check out the Fundraising ToolKit, and visit the News & Events section of the website to see what events are in the works.

Regional Chapter Leaders

Regional Chapter Leaders are responsible for welcoming new patients/caregivers in your region, developing a “VHL Community” on a local level, and initiating annual gatherings and fundraising events. For more information about becoming a Chapter Leader, see page 7 of our Volunteer Manual. Click here for current contact information for the Regional Chapter Leader in your area.

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.

Hotline Volunteer

Hotline volunteers are patients/caregivers that are experienced in managing VHL. They take turns responding to people who call the toll free hotline. VHLA trains hotline volunteers and provides additional support when the caller is in need of services greater than what the hotline volunteer can provide. Support is currently available in English and Spanish. Individuals with additional language experience are especially encouraged to become trained as a hotline volunteer.

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.

The Mighty Author

The Mighty is a story-based health community, which has partnered with the VHL Alliance to increase the general population’s knowledge of VHL and how it plays a role in finding a cure for cancer. VHLA encourages patients and caregivers to submit their story to The Mighty. Please let us know if you have submitted a story and if you have any questions, by contacting the VHL Alliance.

 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. Please complete this form to indicate your interest and a VHLA staff member will be in touch with you.