• Help people with EB

    Your support of DEBRA International or a national EB group enables us to provide the best quality of life for families and individuals affected by EB.

Donation Account: IBAN AT65 6000 0005 1004 5254, BIC BAWAATWW, DEBRA International, Am Heumarkt 27/1, 1030 Vienna

donate now

Patients

This section is for people living with EB, whether they have EB themselves, or are a family member, carer, or even a friend of someone with EB. The intention is to give both detailed information of a practical nature about different aspects of living with EB, as well as pointers to further sources of information, and linking up to share experiences with others in similar situations.

Please note that while much of the information provided under Caring for someone with EB has been contributed by EB clinicians and DEBRA specialist EB nurses with extensive experience, you should always also consult your own EB clinician/ care provider about medical issues you may have, and not act on this information alone – there may be other factors that also need to be taken into consideration in the care of a particular individual.

For those wishing to join in and share experiences or ideas with other members of the EB community, there is a link to the EB online community.

For those wishing to share information about their own experience of living with EB, which will help DEBRA and researchers plan for clinical trials, and lobby for access to future treatments, consider contributing to EBCare.org – Patient Registry.

For those wishing to become involved in advocacy on behalf of EB patients, or to join in with people with other rare conditions, or just to find out more about the bigger political picture, go to the Useful organisations page.