At the National Center for Diseases Control and Public Health, press conference took place concerning World RARE Disease. The meeting was organized and supported by Georgian Foundation For Genetic and Rare Diseases.
The aim of the event was raising awareness about rare diseases in order to diagnose and treat it on time. It is important that information campaign aims to provide accessibility to the better diagnostics and treatment.
Representatives of parliament health committee and Ministry of Health, doctors and members of patients associations attended the meeting. The opinions were expressed by Oleg Kvlilvidze (Georgian Foundation For Genetic and Rare Diseases), Ana Bokolishvili (Georgian Foundation For Genetic and Rare Diseases),Elene Samkharadze (Lung Idiopathic Fibrosis Patients Union), Kakha Vacharadze (Georgian Respiratory Association) and Amiran Gamkrelidze (the National Center for Diseases Control and Public Health).
“It is well-known that the disease revealed in less than 1 individual from 2000 people is considered to be a rear disease. Nowadays, about ten thousand different rare diseases are discovered among 60 million people in Europe and the US. Lacking of awareness and medical knowledge about these diseases creates insecure environment for patients in sense of getting diagnostics and treatment- noted Oleg Kvlividze.
“Today, there are rare diseases diagnostics criteria, guidelines and statistics established in Georgia. It is very important to discover the disease as soon as possible. In the first and second stage, there is a high chance for the treatment of the disease, whereas third and fourth stage is already practically incurable. The medicament cannot treat the disease when it’s already in the last stages”- explains Kakha Vacharadze.
There is a certain experience in Georgian concerning rare diseases. Treatment of some of these diseases is financed by the state. 2016 was announced as a year of the patients with lung idiopathic fibrosis and many actions took place to support them. In 2017, lung idiopathic fibrosis remains as a priority among rare diseases.
According to Center for Diseases Control, the number of rare diseases are increasing in Georgian and there are already 10 000 cases for that, whereas diagnostics and treatment is very expensive. State supports few patients who have rear diseases in most cases.
At the same time, it has been revealed that the state will finance more patients with rare diseases than before. Lung idiopathic fibrosis is one of them because most of patients can’t afford buying medicines because it is too expensive. Ministry of Health announced that it will finance the treatment partially but patients are asking for full coverage.
“Along with the medical and biological achievements, there are many new methods for diagnostics and treatment which is quite expensive. Pharmaceutical companies are not interested in creating medicaments because of low rate of the diseases. It is not profitable for them. However, we hope that we will witness curing many rare diseases”- noted Amiran Gamkrelidze.
World RARE disease day has been celebrated since 2008 and its main goal is to raise awareness of society about difficulties and barriers these diseases bring for patients and their families. The aim of the event is solving problems mentioned above together.
Georgia joined world RARE disease day this year.