Vlasta Zmazek, dipl.oec,President of the association
Founded the group in 1996. Responsible for organisation and the lawfulness of the group's work. She represents the group within the country and abroad; coordinates collaborative efforts with the relevant state and foreign administrative bodies, institutions, organisations and sponsors; secures the funding that enables the group's work; establishes communication with the group's members, their families, and the team of experts; ensures a continuous education for the expert team and the group staff; participates in the organisation of expert meetings as well as events that promote the group's work.
Branka Blagojević, SSS,CEO
Ensures business compliance in accordance with positive legal regulations, financial plan implementation and financial monitoring, coordinates staff, reports donors, provides flow of business information to all relevant stakeholders, conducts business correspondence, administers new members reporting and updates existing, responsible for office operations, represents organization in the country and abroad.
Evica Borčić, SSS,Activity Coordinator
It proposes programs and projects to the steering committee, develops and participates in making of plans for the company, responsible for conducting program activities, creates and writes project proposals, organizes other fundraising activities, proposes improvement of activities, participates in making of the annual plan of revenues and expenditures.
Mateja Krznar, prvostupnica sestrinstva,Health educator
Leads workshops on the care of the patients and the workshop of emotional intelligence. He completed the training of Practical Pediatric EB for Professionals (UK). She is a member of the Croatian Chamber of Nurses. In cooperation Croatian Chamber of Nurses she held many lectures in several hospitals in Zagreb and to Students of Medical Schools and Students of the Medical Polytechnic about Permanent Training of Nurses / Technicians on Bullying Epidermolysis - Nursing for Patients.
Matija Zmazek, SSS,Membership Coordinator
He regularly contacts with other members. It helps them with advice and motives. Intermediates in the exchange of experiences related to education and independent life, proper nutrition, supplements and the care of the wounds. It encourages members to better socialize, to involve more actively in the work of association, and also to their local community. Updates web site and Facebook profile. Administrates a forum for members.
EXPERT TEAMPrim. mr.sc Slobodna Murat Sušić, dr.med
dr.Pave Markoš, gastroenterologist
dr. Mihael Skerlev, dermatologist
dr. Karmela Husar, dermatologist
dr. Branka Marinović, dermatologist
Prim. dr.sc Antun Kljenak, dr.med
Prim. dr.sc Neda Striber, dr.med
Prim. dr.sc Irena Babić, dr.med
dr.sc Maja Karaman Ilić, dr.med
Nives Pustišek, dr.med
Diana Vukman, dietician
Irena Martinis, dietician
Petra Kučan, mag.nutricionizma
dr. Tomislav Šarić, dentist
dr. Vladimir Bratolić, dentist
Zoran Mlinarić, prosthodontist
Snježana Žic, magistra sestrinstva
Marija Kanižaj-Vlahovski, prvostupnica sestrinstva
Albina Ivanovski, med.sestra
Biserska Cvitković, med.sestra