Chances are that if you are reading this page, you or someone you know has been impacted by one of three rare genetic conditions namely VHL, HLRCC, or BHD. We are very glad that you are here; to gather information, learn more about VHL, 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 manifestations and severity 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 tumours, they can recur time and again.
Patient Support
With early detection, ongoing active surveillance and appropriate treatment, VHL disease can have a better prognosis, or outcome, than many other tumour 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 highly 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 vitally important role you play in your VHL patient’s healthcare team. Due to the sheer unpredictability and complexity of VHL, every single member of each patient’s care team plays a pivotal role at some point . As they say “it takes a village”, and in the case of VHL, “it takes an entire VHL Medical Community”
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.
Research into the VHL gene has spawned the development of ten life saving caner drugs in total (with only one of these supporting VHL Patients, and the remainder offering treatment and hope for patients with liver, kidney, thyroid, pancreatic, colorectal, gastrointestinal and endometrial cancers)
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).