In March 2014 the VHL Alliance launched an online questionnaire for patients with BHD or related conditions such as VHL, HLRCC, SDH. The Cancer in Our Genes International Patient (CGIP) Databank aims to identify similarities and differences between these conditions to improve treatments.
In the long run this databank could tell us about genetic and environmental factors in these diseases. It could also identify patient subpopulations that have different symptoms or respond to different treatments.
You can read more about the importance of this here.
Please consider participating in this important clinical research by going to www.vhl.org/databank
If you have any questions or thoughts please contact the VHL alliance on firstname.lastname@example.org.