Practical Experience with Providing Specialized Social Services for Rare Disease Patients / Praktické skúsenosti v poskytovaní špeciálnych sociálnych služieb pre pacientov so zriedkavými chorobami

Organization of Muscular Dystrophy in the Slovak Republic (OMD in SR) is the only specific organization in Slovakia which associates children and adults with muscular dystrophy and other types of neuromuscular diseases (hereafter only NMD) and their families. The organization was founded as an independent public association in 1993. It has been providing social counselling and other specialized social services for its members and clients. In its early years, it performed the community service and nonprofit activities on a voluntary basis; today, a professional team of nine takes part in its activities, seven of which are people with extensive disability, plus two assistants. This change could take place thanks to having obtained the status of a protected workplace in 2009. In accordance with EURORDIS recommendations, OMD in SR takes care of activities in 3 different areas: information services and help line, therapeutic recreational programmes, and respite care services.

As a part of the information service, it provides specialized social counselling for disabled people via phone, email, in person or in the field − at a patient’s place. The organization also publishes its own quality magazine Ozvena (ECHO), which is distributed free-of-charge to all members four times a year. People with NMD are involved in the creation of the magazine from the position of experts and patients. The organization is particularly devoted to Recreational activities the camps for children with NMD, especially boys with Duchenne muscular dystrophy. Activities organized every year include also integrative national meetings of members. The group of relief services includes providing specialized social services in the Personal Assistance Services Agency founded under OMD in SR. It provides wide-range service for 180 personal assistance users in Bratislava region; however, counselling covers the whole Slovakia.

For a long time, the organization has been making effort to change regulations in the legislation which concern several aspects essential for people with NMD. Slovakia is not doing enough to provide financial support for functioning of patient organizations − the subsidy system does not take them into account and donation support is non-existent. A tool for change could and should be the National Plan for Rare Disease, which will not be really implemented without providing subsidies for patient organizations working in the area of rare diseases. In 2012, the organization became a member of EURORDIS and Alliance TREAT - NMD.