vhl alliance

There are no true rules for the VHL journey. It is different for everyone. VHL impacts everyone, the VHLer and those who love the VHLer.  Read how others are living through and thriving during their journey.

Dealing with a Diagnosis 

NEW Blog

Mama-NaNa Bear ROARS for a VHL Cancer Cure by Jill S.
Dear VHL Alliance 
by Maria D.
Strength in the Face of Difficulties by Amr F.

Alternative Medicine

My VHL Journey by Renee S.


Embracing the VHL Community by Deanna W.
Not so Rare by Tina K.

Disability Insurance

Adventures in Applying for and getting SSI Disability by Cathy C.

Family Planning

A Child of Our Love by Anonymous
The Journey Right for Us by Wheatley D.

 Managing Stress

When Life Gives You Lemons by Leona
Yoga and Stress by Lisa J.

Young Adult

My von Hippel-Lindau, My Life, and Me by Nicola T.
#thrivingwithVHL by Andrea B.

To submit a blog, email: blog@vhl.org