Visit of The Croatian Association for Rare Diseases

25.02.2013.

At Thursday, 21 February 2013, representatives of the Croatian Association for Rare Diseases came to visit our Centre. 


In a brief presentation, president of the Association has presented their work, association members, along with the basic problems they encounter in their work, such as problems in diagnosing, networking and cooperation between experts and lack of knowledge about rare diseases.

She also pointed out some basic guidelines of their work planned for this year, such as adoption of the National Programme for rare diseases, organizing an International conference, marking the International Day of rare diseases and the introduction of free telephone help line.

A physiotherapist who works with the Association held a short presentation about the disease Osteogenesis imperfecta, also known as the brittle bone disease and his experience in working with children. At the end of presentation, one of the Association members who was herself diagnosed with this disease, shared with us her experiences and knowledge.

More information can be found on the website of Association,  www.rijetke-bolesti.hr