We started in 2016 to fill a gap, we're a small registered charitable group that is run by volunteers including a permanent professional-level national Peer Support Volunteer.
Peer support may be defined simply as “offering and receiving help, based on shared understanding, respect and mutual empowerment between people in similar situations” (Mead et al., 2001). Thus, it occurs when people share common concerns and draw on their own experiences to offer emotional and practical [or information] support to help each other move forwards…
There are about 900 people with VHL in Canada and 200,000 in the world. We provide peer support to VHL patients (and their family members) in Canada.
References
NORD, US (National Organization of Rare Disorders)
VHLA =VHL Alliance. Boston, MA, USA What You Need to Know About VHL: A reference handbook for people with von Hippel-Lindau, their families, and their medical teams.. Edition 6. Revised 2020. Sign-up at vhl.org.
CCS (Canadian Cancer Society). Family cancer syndromes, eg. VHL
Welireg/Belzutifan on VHLA's Patient Information Page ..."for the treatment of renal cell carcinoma (RCC), pancreatic neuroendocrine tumors (pNET) and hemangioblastomas (HB) in adult VHL patients." vhl.org
Health Canada also approved Belzutifan/Welireg (2022)
FAQ Examples from vhl.org
What is VHL?
Von Hippel-Lindau Disease (VHL) is an inherited tumor predisposition syndrome caused by a flaw in one gene– the VHL gene. VHL involves the growth of both benign and malignant tumors in up to 10 parts of the body. While the first ever pharmacological treatment for VHL was recently approved, active surveillance and surgery at the appropriate time remain the cornerstones of living with VHL for the majority of patients, for the time being.
Is there a cure for VHL?
Unfortunately, there is not currently a cure for VHL.. Please note that major advancements in scanning and surgical procedures, as well as updated best practices on the appropriate time for intervention [e.g. drug therapy, Welireg], have also resulted in significant improvements in the quality of life of people living with VHL…
What should I do about my VHL?
If you or a loved one have been diagnosed with VHL, there are three important things you should do to mitigate some of the worst potential consequences of VHL:
Always make sure to work with [a multidisciplinary team of] medical professionals who are highly experienced in treating VHL patients…
Always make sure that you are up-to-date on your surveillance. You can view the current VHL Surveillance Guidelines [vhl.org]
Be in touch with the VHL Alliance …Today, VHL Alliance VHLA empowers patients and their healthcare teams to best manage their care and serves as the preeminent resource and clearinghouse of patients, caregivers, researchers, and the medical community…[vhl.org]
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