SUPPORT IN YOUR COUNTRY
Living with a rare condition like EB can be incredibly overwhelming and isolating at times, but it is important to remember that you are not alone. There are now nearly 50 DEBRA groups supporting individuals and families with EB globally in collaboration with EB clinical experts. This number grows nearly every year and we look forward to the day when there is DEBRA and expert EB clinical support in every country worldwide.
There are nearly 50 national DEBRA groups worldwide working to support people living with EB. Below, you can find a list of all countries where a DEBRA, or another EB patient support group, exists. Click on the flag to visit your national DEBRA or EB patient support group's website.
EB Without Borders
If there is not a group listed for your country below, visit our EB Without Borders page to see how the team can help. Remember, even if there is no DEBRA or EB patient support group in your country, there may still be EB clinical experts who can help you.
EB clinical experts
There are a number of EB clinical experts in countries worldwide. Even if there is no DEBRA or EB patient support group in your country, there may be healthcare professionals with EB expertise who can help you.
EB CLINICAL EXPERTS
There are various EB clinical experts in countries around the world, many of whom work in close connection with DEBRA and other EB patient support groups.
EB-CLINET is an international network of EB centres and clinical experts. On their website, you can find a list of experts and their contact details. Remember, even if there is no EB clinical expert listed in your country, there are resources on EB care available on our website for you to share with your healthcare providers.
Clinical Practice Guidelines (CPGs)
Whether you have access to EB clinical experts or not, the clinical practice guidelines are an excellent resource to share with your healthcare providers to ensure that you are receiving the best care possible based on the latest best practice for EB.