Active Surveillance Guidelines: Active surveillance is important for anyone living with a chronic disease. However, it is even more important for people living with VHL disease, given the unpredictability of the condition. Early detection, active surveillance and appropriate treatment can greatly reduce the most harmful consequences of this gene mutation.

VHL Patient and Caregiver Handbook: The VHL Handbook is an important reference handbook for people living with von Hippel-Lindau, their families, loved ones, and their medical team. Written in “lay language”, the handbook contains the most up-to-date information about diagnosing and treating VHL. It is an essential guidebook for living and thriving with VHL.

VHLA Kids Handbook: The VHL Kid’s Handbook has been developed to educate children about VHL disease and it’s impact. Written in kid-friendly language, this asset is a great starting point for any conversation with a child about VHL. 

Navigating Health Insurance: Health insurance can be difficult for anyone to navigate. When you have VHL, it can be particularly tricky. Understanding and accessing your insurance plan benefits in order to obtain the care you need can be challenging. This guide is intended to outline some of the key points that VHL patients living in the US may wish to consider as they navigate decisions about health insurance.

Non-VHLA Financial Resources: The resources listed below are unrelated to the VHL Alliance. We suggest that you explore them and determine if you qualify. The VHL Alliance does not have any connection to any of these resources.

Preparing for Surgery: Surgery can be a very stressful time, both physically and mentally. It is also very important to disclose all symptoms, medications, and concern with your physician.

Palliative Care: Palliative care is a healthcare specialty that is focused on improving quality of life for anyone with a chronic illness. It is not just for the end of a person’s life.

Family Planning: If one parent has VHL, the couple has a 50% chance of passing on VHL to any child they have. Whether or not a child has VHL, they will be impacted by VHL because they have a parent with VHL. Additionally, VHL can impact reproductive health for both men and women with VHL.

For Kids and Teens: If you, your friend, or a family member is diagnosed with VHL, it can be scary and confusing. For kids and teens, this can be particularly stressful.

Healthy Lifestyle: There are conscious decisions people can make every day to support their holistic wellbeing.

ER Card: Click below to download a printable ER card. 

Angel Flight NE: The VHL Alliance has partnered with Angel Flight Northeast to provide free air transportation to VHL patients who must travel outside of their geographic area for critical surgeries and other treatments. This partnership makes VHL treatment more accessible for VHL patients.