Human tissue donation is a very special gift that helps scientists find ways of improving diagnosis and treatment of VHL. Please consider this gift and helping the VHL Alliance work towards a brighter future with the VHL patients.
There is no financial cost to the family for donation to research. If you donate blood, you may incur a modest charge from your local doctor or hospital to have the blood drawn. In the case of death, the family is responsible for regular funeral/mortuary or cremation expenses.
Why donate tissue?
We are constantly striving to enhance VHL research. Once considered only “an obscure medical curiosity”, VHL is becoming one of the most important diseases in the study of cancer. Since the discovery that the VHL gene is mutated within the cells in many forms of cancer including clear cell renal cell carcinoma, breast, colon, etc. in the general population, there is increasing interest in studying VHL. The limiting factor is the availability of tissue for study.
As the level of VHL research increases, the need for VHL tissue for research also increases. Scientists depend on research donors supplying different types of human tissues and organs for their studies, such as…
- blood and urine samples (with accompanying medical history)
- discarded surgical specimens
- tissues and organs donated after death
What happens to the tissue I donate?
The tissue will be stored in the tissue bank. Researchers will have to apply for tissue to be used for specific projects after approval is obtained from both the VHL Alliance and NDRI. Your identity and your family’s identity will not be disclosed to the researcher.