This input is dated May 2021
In brief
- Name for organization: Georgian patient organization of HAEi
- 60 members at 1 Jan 2021
- Name of approved HAE treatments:
- Tranexemic Acid
- FFP
- C1 esterase inhibitor (imported from Turkey)
- Icatibant (imported from Turkey)
- Danazol (imported from other countries)
Fun/interesting facts
- Georgian alphabet (3 scripts) is in the UNESCO list of Intangible Cultural Heritage of Humanity.
- Georgia is the cradle of winemaking. Georgia has been producing wine for at least 8,000 years and is considered to be the birthplace of the beverage. UNESCO has listed the traditional Georgian winemaking method – in a clay jar called a Qvevri – on its Intangible Cultural Heritage of Humanity list.
- Mtskheta and Kutaisi , both former capitals of Georgia are among Europe’s 16 oldest cities.
What positive changes have happened for people with HAE, in your country, from 2012 to now?
Patient Organization of Georgia of HAEi has been established since 2019. A total of 25 patients were identified, 18 are now actively treating and monitoring.
Genetic testing is carried out in collaboration with CENTOGENE. Diagnosis and treatment are still not funded by Governmental insurance. Work on this issue is underway.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
In 2020, the Angioedema Center – ACARE was established, which is certified by GA2LEN and 11 trained specialists are working.
The center receives patients with all types of angioedema where they are differentiated and treated by specialists.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
In the Autumn of 2020, a large 3-day event was held in Georgia in the form of a 3 online conference on diagnostics, treatment, monitoring and prevention of HAE. More than 200 people participated.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
HAEi Website, Regional and Global Conferences, the GA2LEN ACARE Network, Prof. Marcus Maurer, Mr. Mikhal Rutkowski and others are very helpful in getting the latest information as well as expanding academic knowledge and sharing clinical experience.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
We want to be widely involved in the clinical trials of HAE. To achieve that the country will find resources for the diagnosis and treatment of patients with HAE. Facilitate the registration and importation of modern medications.
And continue to argue that the HAEi will also represent the acquired forms.
