Chances are that if you are reading this page, you or someone you know has been impacted by one of four rare genetic conditions namely VHL, HLRCC, or BHD. We are very glad that you are here; to gather information, learn about this condition, and most importantly, to take control of your own, your patient’s, or your loved one’s health.
We hope that the VHL UK/Ireland charity will provide you with support and information.
Take just a minute to listen to Willem Dafoe
What is VHL disease?
VHL (von Hippel Lindau) disease is a genetic disease that can cause tumours (benign or malignant) and cysts to develop in up to TEN organs throughout a patient’s life
The manifestation of tumours and cysts is unpredictable – No two patients are alike, even within the same family gene pool.
Sometimes they occur in different organs at the same time: and sometimes they present as many tumours or cysts in single or multiple organs. And even after surgery to remove them, they can recur time and again.
Patient Support
With early detection, active surveillance and appropriate treatment, VHL disease has a better prognosis, or outcome, than many other tumor conditions and cancers. People with VHL as well as individuals who have a family history of VHL are encouraged to seek care from a healthcare team experienced with this complex disease
Continue exploring this section of the website to learn about where to find clinical care, Active Surveillance, support events for patients and carers, and videos about the latest research and potential treatments
Clinician Support
Thank you for the important role you play in a VHL patient’s healthcare team. Even though a VHL patient may have a whole team of specialists, a primary care provider is essential.
The VHL Alliance provides opportunities for healthcare professionals to learn the most up to date information about basic, translational, and clinical VHL research.
Research
The VHL Alliance and VHL UK/ Ireland are both constantly striving to increase the level of VHL research. Once considered only “an obscure medical curiosity”, in reality, VHL is becoming one of the most important diseases in the study of cancer.
Support Us
You can help us in lots of ways, from Fundraising and Donations, to purchasing Merchandise from our eBay Shop.
Every penny raised goes to supporting research into VHL along with support information & events to help VHL patients and their loved-ones.
You can also help in raising awareness through various media; and why not think about joining the Committee or volunteering to help with with specific projects (large and small).