There are 500.000 people in Serbia who are sick with rare diseases, while that number in Europe is around 30 million. The estimates are that there are around 7.000 rare diseases in the world, which are often incorrectly diagnosed. Dr. Tijana Bugarcic from Kragujevac, who has been living abroad for years, presented these shocking data at the beginning of November, and she dedicated her career to those suffering from cancer or rare diseases, as well as sick children.
Many patients aren't even aware that the problem that has been troubling them is actually a rare disease, she warned at the time, which turns out that it is an incorrect diagnosis in three out of four cases.
- The big problem is diagnostics, especially in underdeveloped and less developed countries. It was estimated that 40 percent of patients with rare diseases received at least one wrong diagnosis. Some people never find out which diseases they are suffering from, some live with the wrong diagnoses for years, even for a lifetime - said Bugarcic for Telegraf.rs and added that the number of those who suffer from a rare illness is certainly higher than the official one in Serbia.
The number is so high that the European Commision considers that around 6-8% of the population in Serbia suffers from some rare disease.
- There are currently no official statistical data on the number of patients available in Serbia, so it is difficult to estimate which are "the most serious" rare diseases in this area. It also makes proper planning of health care difficult - she explains.
PLATFORM WHICH UNITES PARTICIPANTS IN THE TREATMENT PROCESS
Bugarcic dedicated her career to helping those who have this kind of problem, as well as sick children, she is also striving to bridge the gap in the communication of those who can help each other.
- While I was working as a consultant for the companies working in this area, one thing was obvious - there is not enough cooperation between the researchers and the companies. Also, it was clear that it is necessary to include groups of patients to a greater extent into processes of improving diagnostics and finding new treatments. That is how "Rarebase" idea was born - she explained.
— Rarebase (@Rarebaseltd) July 9, 2016
"Rarebase" is a platform for cooperation between companies working on finding drugs for rare diseases, a group of patients, doctors, investors and all others who can contribute and who are contributing to finding the necessary drugs.
- In addition to the internet portal that we have been maintaining for several years, we also organize workshops and conferences. This year we organized the second international conference in Belgrade on November 1 and 2, where we discussed innovative therapies, current problems in the diagnosis of rare diseases, as well as problems in the process of drug testing, the challenges faced by patients and other topics related to a rare disease - says Bugarcic.
This year the unavoidable topic at the conference was incorrect diagnostics.
- We had "Symptoma" as one of the participants, the company which significantly helps with its software to make the diagnosing of rare diseases as precise as possible. So, we can say that there is progress, and cooperation is the key! - she said.
Tijana Bugarcic was born in Kragujevac, where she grew up and where she graduated from chemistry. After that, she earned her Ph.D. in innovative cancer medicines in Edinburg, and then she graduated from her MBA studies in the field of strategy. Although she has been in the service industry for years, she has remained as an advisor to companies who are working on finding innovative therapies for cancer and she is helping them in the process.
Besides leading the Rarebase, she is also working as a consultant and coach for the European Commision, European bank and European center for prevention and control of diseases. She published many scientific works and patents and she held many speeches at the international conferences and gatherings.
In early November, she organized the Rare Diseases and Orphan Drugs Global Forum in Belgrade, where she brought together experts from around the world to discuss and improve research in the areas of rare diseases. Among the experts from research centers and industry, there were also patient groups and patients themselves, whose perspective in this research had a great influence.
(Telegraf.co.uk / D.D.S.)