VHL diseasevhlsendabide2020-12-23T10:15:34+01:00

SENDA BIDE

The VHL (Von Hippel Lindau) syndrome is caused by a genetic mutation. This mutation occurs in a gene, also known as VHL, whose purpose is to control tumour growth. People with VHL syndrome are liable to have tumours appear in as many as ten different parts of the body, including the head or kidneys.

Constant monitoring of all these organs and early detection of tumours for people living with VHL are extremely important.

Progress in research on its cure is crucial for the lives of the people affected and strengthens our general understanding of cancer and cancer treatment.

1/36000

It is a rare disease. It affects 1 individual out of 36,000.

TUMOURS

Gene mutations provoke the growth of tumours again and again.

MONITORING

It is important that different areas of the body and a number of vital organs be continuously monitored to ensure early detection of tumours.

HAVE YOU BEEN DIAGNOSED WITH THE VHL SYNDROME?

We have been too. In Sendabide, we hope to bring together everyone suffering from VHL in the Basque Country, and their families, in order to help each other in our shared struggle. We believe it is important to join together in this effort, irrespective of how much energy any given individual might have or contribution they might make. Just to be registered is in itself important.

MORE INFORMATION

VHL syndrome guide

AEB VHL Alliance

VHL sindromea duten familien estatu mailako aliantza

VHL Europe

YOUR ASSISTANT

We want to promote research in order to continue to build on our knowledge and treatment of the disease.

HELP US ON OUR ROAD!

And ease the journey for those affected by the VHL syndrome and their loved ones. Do your bit for Sendabide!