The Canadian VHL Alliance and its Partnership with

Cancer Research Society


Winner of the $120,000 Grant, in partnership with the CRS is:


Harnessing autophagy and lysosomes as a potential therapeutic approach in hereditary renal cell carcinoma with von Hippel-Lindau disease


Summary: Von Hippel-Lindau (VHL) is an inherited neoplasia syndrome caused by mutations on the VHL gene and resulting in the development of tumours in different organs such as the eye, ear, adrenal gland, brain, pancreas and kidney. About 70% of VHL patients will develop Renal Cell Carcinoma (RCC) which occurs earlier in their lifetime than other people developing RCC. No curative treatment is available for ccRCC. This project is based on our previous work in kidney cancer and aims to exploit lysosomal vulnerabilities in VHL-mutated cells to develop novel therapeutic strategy for patients with ccRCC associated with VHL disease.


The Canadian von Hippel-Lindau Alliance has been working hard to raise awareness of VHL and to raise Canadian funds.  This allows the organization to source and invest in Canadian research for a cure.  Over 93% of all funds donated to the Canadian VHL Alliance go directly to research and all donations receive a Canadian charitable donation tax receipt. Our Board of Directors is made up entirely of volunteers who either have VHL or have close friends or family members who suffer from this disease.


We believe that it is important that you know where your donation is going and how it is helping your friends and families who suffer from von Hippel-Lindau disease.


The CVHLA formed a partnership with the Cancer Research Society in 2018 in order to;


  • leverage your donation and maximize research funding.  The Cancer Research Society has matched the $60,000 that the CVHLA has donated in both 2018 and a second $60,000 to create a new 2020 VHL Research Project in Canada.


  • The CVHLA has directly partnered with the CRS to create two $120,000 grants, totaling $240,000 of VHL research grants over the past 3 years


  • In fact, the attraction of the $120,000 2018 CVHLA grant attracted such good submissions that the CRS supported a second $120,000 VHL grant.


As a result of this partnership, $360,000 in VHL research has been funded in the last three years as a result of the partnership between the Canadian VHL Alliance and the Cancer Research Society.

The 2018 partnership between the CVHLA and the CRS created a grant that was won by Dr. Najafabadi.  This research is focusing on the relationship between VHL and renal cancer.  A synopsis of this project is available at