VHL Medical Clinical Consultation Resources:
Harriet Druker, MSc., Genetic Counsellor
The Hospital for Sick Children (Toronto)
Cancer Genetics Program
Rare Disease Information and Resource Centre (English and French Website/Internet Searches)
Quebec Coalition of Orphan Diseases/
Regroupement québécois des maladies orphelines (RQMO)
International webportal for rare diseases (e.g., Canadian patient groups, centres for genetic testing, research)
Canadian Organization of Rare Disorders (CORD)
the only national organization that represents all rare disease patient groups
VHL Alliance (Boston, MA, USA)
-A major resource for information on VHL
-VHL Handbook: What You Need to Know About VHL is a must-have
Inspire.com has an excellent forum, by username/anonymous, sponsored by VHLA
PubMed comprises more than 25 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites.
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... 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.
Join and access programs for cancer patients (including VHL) like ones on meditation, other mind-body activities, nutrition and cooking, money matters -see Brochure