DEBRA Croatia
DEBRA Croatia is an association that provides a multidisciplinary approach and continuous holistic care for people with epidermolysis bullosa in the health and social care system.
People with epidermolysis bullosa and their families receive all the information about their disease from the association. Additionally, DEBRA provides various social and health services. The organization strives towards becoming a ONE STOP SHOP system that is designed to facilitate and support integrated care, social, and health care for people with epidermolysis bullosa as well as become the only association in the field of rare dermatological diseases like acquired epidermolysis bullosa and ichthyosis.
Having an insight on issues related to dermatological diseases, DEBRA wants to expand its area of work, all in the interest of raising the quality of life for people with rare dermatological diseases.
Through the GlobalSkin Member Impact Fund, DERA Croatia hosted a webinar series to provide an exchange of knowledge, education, and information which will ensure a better understanding of not just epidermolysis bullosa, but also of other rare diseases. The overarching goal of the organization is to help raise the quality of life for people living with a rare dermatological disease, and to help educate health care providers.
DEBRA Croatia recognizes that there is still a major lack of appropriate communication between health care and social systems, that provide properly integrated care for patients. During COVID-19, DEBRA Croatia recognized that virtual education would be an appropriate and much-needed solution. The webinars were structured in four different modules, each adapted for a specific field; health professionals who primarily care for patients, nurses and district nurses, occupational therapists, and social workers.
They raised awareness about rare dermatological diseases, underlined the importance of accurate knowledge about diagnosis, and informed attendees about the expansion of work on other rare dermatological diseases. A large focus was on informing patients and their families on their first visit to the hospital and encouraging an integrated approach by healthcare practitioners.
There were many success stories from the event, from health care providers and patients.
“Thank you very much for this lecture, only outside the university we actually get an insight into how wide our field of work is and I am glad that you decided to hold this lecture because there is too little talk about such rare diseases. All praise for the lecture, which was informative, concrete, and interesting, I am especially glad that you described in detail the role of an occupational therapist and gave concrete examples of adaptation. :) Thanks again and best regards.” - Occupational Therapy Student
“In most cases, due to the lack of practical, social and nursing support by the institution, patients are left to fend for themselves, and are further burdened with expertise and various revisions as if the disease is not permanent and incurable. The most concrete and greatest support was provided by the association of patients with EB "Debra". For each new and unknown situation, we will always receive great help in exchanging information and experiences with other EB patients, organizing examinations by specialist doctors or nursing care. For patients' associations not to be the only ones that patients and their families can turn to, people who work in other institutions should be additionally educated, because they are inevitable in resolving the existential rights of patients.” - mother of EBS patient
To learn more about this organization visit their website: https://www.debra.hr/en/homepage/
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