Resources for living with dystrophic epidermolysis bullosa (DEB)


With Krystal Connect, you are not alone on your DEB journey

Krystal Biotech is committed to providing resources to help you learn more about DEB and talk with your healthcare provider about diagnosis and testing.

Call 1-844-5-KRYSTAL for Krystal Connect personalized support

Whether you just want to keep in touch or need additional support, Krystal Connect is here to help.

Krystal Connect Community Education Liaisons help raise awareness of DEB and can help you and your family learn more about DEB by:

  • Connecting you with helpful tools and resources about DEB
  • Providing education about family trees, inheritance, and genetic testing for you or family members
  • Providing educational opportunities via one-on-one, family, or group meetings

Krystal Community Education Liaisons have nursing or genetic counseling backgrounds.

Contact a Community Education Liaison at

Downloadable resources for you

DEB Patient Brochure

Information about DEB for you and your family to download and save

Understanding Genetic Testing Brochure

Information about genetic testing that you can use as a resource for discussion with your healthcare team.

Educational programs on DEB designed for you

Krystal Biotech offers educational programs to help you learn more about DEB from medical experts and members of the DEB community.

Register for one of our upcoming events here—where you’ll find specific information about our upcoming events and how to participate.

See stories about living with DEB

Abby & Valerie's Story
Jenny's Story

Support and advocacy for DEB

You are not alone on your DEB journey.

There are a number of organizations that provide support to individuals and families living with DEB. Here are some that might be a fit for you:

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Recognizing DEB

A missed DEB diagnosis can happen if doctors only look at symptoms alone

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Accurate Diagnosis Matters

DEB can have serious risks and complications, and accurate diagnosis is the first step to address them

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The Value of Accurately Knowing

An accurate DEB diagnosis can make a difference in how you live with DEB, from understanding the future to receiving accurate care

Not all blisters are the same. Could yours be DEB? Ask your doctor about a genetic test for DEB