Free EB Information Resources

Frequently in my role as a New Family Advocate with DebRA, I’m asked “Where…” Where can I find information, where can I find free supply samples or other resources, where can I find other families going through what we’re experiencing? It’s a common concern. No one wants to feel alone, especially when we’re faced with something unfamiliar, and let’s face it, somewhat complicated and certainly frightening as a parent, as a person living with EB or as a friend or loved one trying to show support.

These are just a few of the free resources I’ve come upon in my ongoing search for tools and information for EB families. (Please note: the first three links below are to posted PDF files not web pages, so don’t be alarmed when prompted about continuing to open the file.) I hope you find these useful and welcome suggestions for other resources worth checking out. Feel free to email me at with your own recommendations.

*The following suggested links are provided as a courtesy to the EB Resource community to help its members find references easily and is for informational purposes only. The links referenced are not intended to be a substitute for the advice of your personal health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care provider.

DEBRA International
Stanford School of Medicine, Dermatology Department, Genetic Skin Center
National Institute of Arthritis and Musculoskeletal and Skin Diseases
DebRA of America
EB Friends

Related Posts:
Learning from Each Other, Part 1
Learning from Each Other, Part 2
The Everyday Challenges of New Parents

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  1. Stress Management for Caregivers | EB Resource
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  3. A Closer Look at Rare Disease Day | EB Resource