Freedom of Information Center of Armenia.

Name of the sub-grantee: "Fund of Armenian Relief Fellowship Alumni’s Association (FAR FAA)"

Name of the sub-grant project: "Informed Health Care"

Brief Description:

The aim of the program is to improve the abilities of Fund of Armenian Relief Fellowship Alumni’s Association (FAR FAA), promote the public awareness of the latter and the acquisition of new local and foreign partners.
To raise awareness of the rare hereditary angioedema in different regions and among the physicians of Yerevan, as well as the general public, the patients and their relatives, a series of seminars will be performed as well as research will be conducted in discovering of the disease in patients, a national register will be formed, series of steps towards the angioedema diagnosis and treatment will be developed for Armenia. This will be introduced to the Ministry of Health, aiming to receive further support from the Government. The treatment of this disease will be included under the state funded treatment, all within the framework of the program.
The program will include the education of identified patients as well as their involvement into the HAE improvement program, and raising awareness.
As a result, by the end of the program we will have a non government organization ( NGO ) with advanced capabilities, new technologies, as well as with new members and partners, trained and informed physicians, newly identified and educated patients as well as a national registry with their information, an online platform for patients and physicians, a bundle of suggestions and steps for collaborating with the Ministry of Health.

Actions in Brief:

1. Formation of working group
2. Providing of technical equipment aimed to increase the capacity building of NGO
3. Realization of preparatory work, preparation of lectures and presentations for the seminars, development and printing of flyers and pamphlets for physicians, patients and their relatives.
4. Spreading of information among the physicians and patients through different ways, including articles in publicly accessible magazines, television and social media.
5. Creation of a website about HAE
6. Organization of seminars for physicians of Yerevan and other regions, as well as patient examination
7. Data collection of HAE patients from Yerevan and different regions of Armenia, in collaboration with the regional health administration representatives.
8. Examination of the collected data and a formation of a national registry
9. Education of HAE patients and including the latter in the awareness raising of the issue
10. The introduction of the collected data of HAE patients and the suggestions bundle to the Ministry of Healthcare, in order to offer including the HAE under the state funded treatment program, plugging the results into the E-health system.