Blog
What To Consider When Applying for Disability With VHL
Disclaimer: The process of applying for disability benefits with VHL disease can vary based on individual circumstances, medical history, and location. This post provides general information and resources but should
Supporting Mental Health in the VHL Community
Supporting Mental Health in the VHL CommunityAs we kick off the new year, we’re here to remind you of the importance of prioritizing mental and emotional health. Living with von
Exciting Initiatives for 2025: Advancing Care and Support for the VHL Community
As we enter 2025, the VHL Alliance is proud to unveil a series of new initiatives aimed at advancing care, education, and support for individuals and families affected by von
3 Things You Might Have Missed at the VHL Medical Symposium in Milan
The 16th International VHL Medical Symposium recently took place in Milan, Italy. More than 200 scientists, clinicians, and patient advocates attended, sharing valuable insights and research advancements aimed at improving
5 Ways To Fight Scanxiety
Thank you to our guest contributor this month, Tessa Whitten! There are a few days of the year that I find myself performing my own personal floor routine of mental
Four Exciting Developments in Using Belzutifan to Treat VHL patients
At the VHL Alliance, we are committed to bringing you the latest developments in research and treatment options for Von Hippel-Lindau (VHL) disease. Managing VHL can be challenging, but recent
Four Ways To Reduce The Cost of your VHL Care
Here at the VHL Alliance, it’s clear that the financial burden of von Hippel-Lindau continues to be a top priority for our community. The cost of traveling to and from
Awareness Month 2024 – Ian’s Story
“I faced a choice—crumble over or get back up.” – Ian Phillips, VHL Community Member Some people, for varying reasons, have wisdom beyond their years. A senior at Lincoln
Awareness Month | Isaiah, VHL Ninja Warrior
“I give it everything I’ve got. I make the most of it.” – Isaiah Lee Sometimes something remarkable happens in life. For Isaiah Lee that time is now. A
May Awareness Month 2023 | Jacq’s Story
We had the opportunity to speak with a few of our community members to share their stories during VHL Awareness Month. First, we spoke with Jacqueline Zarro. Jacqueline (Jacq)
May Awareness Month 2023 | Stacy’s Story
Today marks the first day of VHL Awareness month. Each May, we use this time as a community to connect, spread awareness, and celebrate VHL wins! This year, the VHLA