From October 17th to 19th Neurology forum for neurodegenerative diseases was held at the University Campus in Rijeka, organized by Dr. Vuletić, the head of the Neurology clinic based in this beautiful city on the Adriatic coast. Despite the fact that Rett syndrome is not a neurodegenerative disorder Dr. Vuletić invited Prof. Curfs and Smeets from the Rett Centre in Maastricht, Netherlands to give lectures on this complex rare disorder. Around 40 girls and women with Rett syndrome live in Croatia but unfortunately there are numerous non-diagnosed cases.
Silent Angels, Tihi Anđeli, newly founded Rett syndrome association in Croatia, used this occasion to organize the workshop for families with the doctors from Maastricht. At the same time Danijela Szili talked to the families and gave a presentation in Croatian about the European Rett Conference that recently took place in Tampere, Finland.
The whole event concluded with the meeting of multi-disciplinary professional team Dr. Vuletić gathered for this occasion, visitors from Maastricht, Danijela Szili who represented RSE, the leadership of the Silent Angels and two Rett syndrome families. The multi-disciplinary team consisted of the neurologists, physiotherapists, psychiatrist, neurology department’s main nurse and speech therapist. The strategy to improve the care and treatment of the Rett syndrome patients in Croatia was discussed. Lack of information and appropriated symptomatic treatment leave permanent consequences that cannot easily be corrected later in life.
There is a huge need for such a multi-disciplinary trained team in Croatia where individuals with Rett syndrome and their families where sadly left to themselves in the past. Raising their quality of life as well as awareness and knowledge about Rett syndrome in Croatia is something parent association Silent Angels is trying to achieve.
