April 03rd, 2018

Sometimes I feel overwhelmed, intimidated, or scared...  Doing my own research on disease-specific VHL info, as a patient, has helped me to become aware of some comprehensive resources:

GARD Interactive VHL Information Tool
 
Genetic and Rare Diseases Information Center (GARD) is a program of the [US] National Center for Advancing Translational Sciences (NCATS) to provide access to current, reliable, and easy to understand information about rare or genetic diseases

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Women Wading Through the Web: A Health Toolkit
 
This toolkit was produced by womenshealthmatters.ca at Women’s College Hospital in partnership with the Women’s College Research Institute and the Ontario Women’s Health Network.

Know the Science Interactive

Brief resources that range from informative guides to modules, such as:

• 9 Questions to Help You Make Sense of Health Research
• The Facts About Health News Stories
• How Medications and Supplements Can Interact
• Natural Doesn’t Necessarily Mean Safer, or Better

 

VHL Alliance Website