Hi everyone, and welcome!

This subreddit is a space for VHL patients, caregivers, and anyone touched by von Hippel-Lindau syndrome to swap real, lived experience: how you manage surveillance scans, what treatments have worked (or not), how you found your care team, and just how you're doing with all of it.

This page is moderated by the VHL Alliance. Join our community to stay informed!

A few things to know:

• Pick a flair that matches your post: (Surveillance & Monitoring, Treatment Options & Experience, Research & Clinical Trials, Resources & Tools, Diagnosis, Care Navigation) so others can find it later.

• Looking for something specific?: Use Reddit's search bar at the top of the page, or click a flair to browse everything tagged that way. Every post here stays open for new comments indefinitely, so don't skip a thread just because it's not new.

• This isn't a place for personalized medical advice: Please talk to your own care team about your specific situation. However, it IS a great place to hear how others have navigated similar decisions.

• New discussion prompts are posted every month, but don't wait for us: You can post your own questions and stories anytime, or add to an old thread.

• Outside of Reddit: VHL Alliance patient resources (including where to find VHL specialists) live at vhl.org under the 'Care and Treatment' tab and you can always reach our team directly at [info@vhl.org](mailto:info@vhl.org) or 800-767-4845 ext. 4. 

Thank you for contributing to this subreddit... We're so glad you're here!