Georgia Marks World Rare Disease Day

World Non-Governmental Organizations have named idiopathic pulmonary fibrosis (IPF) as the 2016 priority direction among other rare diseases.

In relation to this day, a news conference was held at Radisson BLU Iveria hotel, Tbilisi with the support of the Georgian Foundation of Genetic and Rare Disease, the Union of IPF Patients and GEPRA, the PR and marketing communications company.

The information campaign that started on October 15, 2015, the day of foundation of the IPF Patients Union, aims at increasing public awareness about rare diseases, including idiopathic pulmonary fibrosis (IPF), to timely detect the disease and then to properly manage it, and to provide IPF patients with anti-fibrotic therapy. The campaign is led and managed by IPF patient Elene Samkharadze.

Media agencies, state structures, companies, organizations and ordinary citizens also joined the information campaign of Breathe with Hope, as part of the World Week of IPF.

The following participants delivered a speech at the news conference:

Oleg Kvlividze – the Georgian Foundation of Genetic and Rare Diseases

Ana Bokolishvili – the Georgian Foundation of Genetic and Rare Diseases

Elene Samkharadze – the Union of IPF Patients

Tinatin Samkurashvili – GEPRA, PR and marketing communications company.

Representatives of the parliament’s health committee, associations of rare diseases of Georgia and respirators, doctor-pulmonologists, patients, reporters and other guests also attended the meeting.

“Though a patient may die 2-5 years after the diagnosis, our society has almost no information about this disease. More than half the cases cannot be diagnosed, while the other half cannot receive timely treatment because of financial defecit,” GEPRA consultant Tinatin Samkurashvili noted.

IPF is one of the heaviest forms of disease and its diagnosis was impossible for many years, not only Georgia but throughout the world. In rare cases this disease is diagnosed at an early stage. About 50% of the cases cannot be diagnosed, while in another, 50% cases are diagnosed too late.

The only medication for treating this disease is very expensive. Elene Samkharadze stressed that aside from public awareness-raising, it is also of crucial importance that this medication be affordable for all IPF patients.

The Georgian Foundation of Genetic and Rare Diseases marks World Rare Disease Day annually jointly with partner organizations and NGOs.