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Georgia Marks World Rare Disease Day

Georgia marks the World  Nongovernmental organizations have named the 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. The meeting was held by 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 proper manage it, to provide IPF patients with anti-fibrotic therapy. It is important that the campaign is led and managed by IPF patient Elene Samkharadze.

Media agencies, state structures, companies, organizations and ordinary citizens have also joined the information campaign of Breathe with Hope, as part of the world week of idiopathic pulmonary fibrosis (IPF).

The following participants have 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.

„Despite a patient may die in 2-5 years after the diagnosis, our society has almost no information about this disease. Regretfully, we have aggravated results. More than a half part of the cases cannot be diagnosed, while another half cannot receive timely treatment because of financial shortage”, GEPRA consultant Tinatin Samkurashvili noted.

The idiopathic pulmonary fibrosis (IPF) is one of the heaviest forms of disease and its diagnosis was impossible for many years in not only Georgia, but all over the world. In rare cases this disease is diagnosed at the early stage. About 50% of the cases cannot be diagnosed, while in another 50% cases diagnosis is delayed.

The only medication for treating this disease is very expensive. Elene Samkharadze, head of the Union of IPF patients, stressed the importance of affordability of this medication. Besides public awareness, it is also of crucial importance that this medication be affordable for all IPF patients, she noted.

It is worth noting the Georgian Foundation of Genetic and Rare Diseases marks the World Rare Disease Day every year jointly with partner organizations and NGOs. This year the accent was made on idiopathic pulmonary fibrosis (IPF) and this disease was determined as the 2016 priority direction among other rare diseases.

At the end of the meeting, all participants blew soap bubbles as the IPF symbol to show their support and contribution to this important undertaking.