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DEBRA Croatia marks Rare Disease Day 2024

DEBRA Croatia has worked hard for 28 years to raise awareness about EB, a rare dermatological disease, but the job is not done yet.

For this year, DEBRA Croatia decided to start with new approach and organise an experience workshop for partners and policy makers in Zagreb, Croatia. They organised three workshops; in the first were representatives from the City Office for Social Protection, Health, War Veterans and People with Disabilities, in the second were representatives from Croatian Health Insurance Fund, Ministry of Health, City Department for Health Promotion, Prevention and Early Detection of Diseases and University of Applied Health Sciences and in the third were students form the School of Nursing Vrapče. They also held a lecture for Dermatovenerology Student Section from The Faculty of Medicine at the University of Rijeka, including a presentation from a EB patient who spoke about living with EB and challenges in everyday life.

DEBRA Croatia workshop leaflet and summary
DEBRA Croatia workshop leaflet and summary

The health educator held a lecture about epidermolysis bullosa and the services DEBRA Croatia provide for EB families. They introduced workshop participants with materials for skin care and bandaged their hands so that they could experience the daily life of people with EB for a moment. Workshop participants experienced how to perform everyday activities as brushing teeth, dressing, eating and drinking, writing and playing with didactic toys.

Here are some of the statements workshop participants:

"This workshop is an excellent way to push this rigid system and finally start changing it for the better."

"EB is not an unknown disease to me, but when you put yourself in a person’s shoes and feel 5% of what it's like for them, only then you understand what the disease is."

"I was very impressed by Helena. Until we saw her, she didn't exist for any of us, she was hidden. Thank you for your work and for speaking on behalf of people with EB."

In addition to the invitations sent to the decision makers, the invitation was also sent to the public via their social networks and in person on 29th February in Zrinjevac Square.

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