How do you evaluate whether the conference was good?

• Based on the knowledge you gained through high-quality lectures which triggered new questions?
• Based on inspiring and high-quality conversations during breaks, over a cup of not-so-high-quality coffee?
• Based on the ideas that were initiated at the conference and are being implemented even after a year?
• Maybe all of the above?

The Conference on Rare Neurotransmitter Diseases RNTD-R2T that was held in Belgrade a year ago, in cooperation with patient organizations, doctors and researchers with the support of EJPRD and additional sponsors, is highly appreciated according to all of the above. The idea of continuing cooperation, whose flame was started at the conference, continued its life through the Young Scientist Forum (YSF) meeting.

We are proud to share that Lil' Brave One successfully performed another advocacy initiative: Improving the health care mechanism for children with rare neurotransmitter diseases, developmental difficulties and chronic diseases, in the Preschool Institution "Radosno detinjstvo" Novi Sad.

All children have the right to grow up in an environment that stimulates their psychomotor development and prepares them for school, in accordance with the UN Convention on the Rights of the Child. For children with rare neurotransmitter and chronic diseases, it is necessary to ensure the preschool environment and health care protection, enabling the possibility of regular intake of life-necessary prescribed medications.

​Da li ste pokušali da refundirate troškove pregleda?

Kako se navodi na internet stranici Republičkog fonda za zdravstveno osiguranje (RFZO) “sve troškove zdravstvene zaštite, koji su utvrđeni kao pravo iz zdravstvenog osiguranja finansira Republički fond za zdrastveno osiguranje. Osim propisane participacije, građanima NE SME biti naplaćeno ništa drugo”.

Međutim, u praksi smo iskusili drugačiju situaciju, kao što su: 

• plaćanje lekova, 
• plaćanje laboratorijskih analiza,
• plaćanje pregleda, intervencija, snimanja 
• plaćanje medicinsko-tehničkih pomagala
• plaćanje različitih usluga privatnih zdravstvenih ustanova, itd.

Zbog toga što ne znaju da imaju pravo na refundaciju, niti postupak kako da ostvare refundaciju, mnogi roditelji dece sa retkim neurotransmiterskim bolestima i drugim hroničnim nezaraznim bolestima plaćaju zdravstvene usluge i ne refundiraju te troškove. Često oni plaćaju laboratorijske analize, ali i snimanja kao što su snimanja magnetnom rezonancom. Važno je znati da zdravstvene usluge koje zdravstvena ustanova ne može da pruži u roku od 30 dana, osiguranici mogu da obave u drugoj ustanovi, a da troškove refundiraju u nadležnoj filijali zdravstvenog osiguranja.