RARE DISEASE DAY MARKED
On the occasion of Rare Disease Day the traditional event of posting messages of support on the improvised tree was organized at Shopping Center Forum with the intention to raise awareness about the challenges, hopes and needs of those living with rare diseases.
Founded in 2010, the National Organisation for Rare Diseases of Serbia is an umbrella organization bringing together different rare disease patient organisations. The main goals and activities are: representing rare disease patients and their problems, communicating with all of the stakeholders – Ministries of Health and Social Welfare, the Serbian NHIF, media, scientists, healthcare professionals and pharmaceutical industry representatives.
The Rare Disease Day 2017 theme was research. The Rare Disease Day slogan was ‘With research, possibilities are limitless’. It was an opportunity to call upon researchers, universities, students, companies, policy makers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
Nis City Mayor Darko Bulatovic supported this event and wrote his message of support. “With this action we show humanity, but also the wish to, by our own example, raise awareness in others of solidarity with people affected by rare diseases. I will have the meeting with the representatives of the National Organisation for Rare Diseases of Serbia to discuss all aspects of institutional assistance that could be available to people suffering from rare diseases and I hope to find modalities to provide primarily psychological support to patients, ” said Mayor Bulatovic.