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Brief BLOG posts usually on coping tips and experiences
Genetic and Rare Diseases Information Centre (GARD)
"Von Hippel-Lindau (VHL) disease is an inherited disorder characterized by the abnormal growth of both benign and cancerous tumors and cysts in many parts of the body..."
"The pre-eminent resource for patients, caregivers, researchers, and the medical community... Central to patient care is the VHL Handbook: What You Need to Know About VHL, written and published by VHLA" also sign up for free download
A 501(c)(3) non-profit
1208 VFW Parkway, Suite 303
Boston, MA, USA, 02132
VHL is a hereditary or family cancer syndrome:
Contact an expert with questions:
Bailey Gallinger, MSc, CGC
Genetic Counsellor, Cancer Genetics Program
The Hospital for Sick Children
Phone: 416-813-8597; Internal: 208597
Evidence for genetic anticipation in von Hippel-Lindau syndrome (2018)
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Kids Help Phone - is a Canadian and world leader known for our expertise and continuous innovation as Canada’s only 24/7 counselling and information service for young people... Since 1989, our trained, professional counsellors have been listening to kids.
Wellspring is a network of community-based support centres offering programs and services that meet the emotional, social, practical and restorative needs of people living with cancer and those who care for them. Wellspring programs are offered free of charge. There are eight Wellspring centres located in communities across Southern Ontario and Alberta.