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April 03rd, 2018

4/3/2018

 
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:
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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.

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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
 
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VHL Alliance Website

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