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
1-844-5-KRYSTAL
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.
See stories about living with DEB
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:
Recognizing DEB
A missed DEB diagnosis can happen if doctors only look at symptoms alone
Accurate Diagnosis Matters
DEB can have serious risks and complications, and accurate diagnosis is the first step to address them
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