Description
The project addresses the difficulties faced by the people suffering from the rare disease aniridia and their families due to insufficient information available and discrimination. The project aims at providing information to the affected people, helping them to monitor their condition, overcome the emotional trauma and integrate better in the society. First, "Aniridia Bulgaria" will exchange experience with its Norway counterpart and compile a manual of good practices. Next, 2 awareness-raising trainings of medical experts will be organized in Sofia and Varna. Third, 5 information seminars will be held. Fourth, a register of patients with aniridia will be created. Fifth, a self-help mechanism for self-diagnosis will be set up. Finally, a blog and forum will be created on the applicant’s website. The project will benefit all the target groups of patients, their families, health and education experts by raising awareness and supporting the people’s integration in the society.
Summary of project results
The project achieved its main goal to inform and raise awareness about the rare disease aniridia. First, a large number of information materials, i.e. brochures, leaflets, portfolio, were published and disseminated. Second, two specialized training sessions for specialists and 5 information seminars for non-specialists were held. Next, electronic devices were purchased and provided to the patients with aniridia as a self-help mechanism that can make daily life easier for the patients. The project partner prepared a manual of good practices. The experience shared in the manual about the development and work of the Norwegian association was motivating, inspiring and useful for the approach and the project altogether. The cooperation developed will continue after the end of the project and might be the foundation of other initiatives. Project materials and information can be found at:
http://aniridiabg.eu
Summary of bilateral results
Aniridia Norway exchanged experience with Aniridia Bulgaria and compiled a manual of good practices. It also provided ongoing and essential support for better implementation of the planned activities. The shared experience and the joint activities strengthened the bilateral partnership and created potential for lasting cooperation. A partnership agreement was signed during the bilateral workshop organised under Measure C.