The goal of our project is to increase the awareness of the community on rare diseases through consensus building between different stakeholders involved in this field (patients, professionals, social workers, etc).

The project is supported by a grant from the Trust for Civil Society in Central and Eastern Europe.

         1.5 Objectives:

a. To develop a national network of key representatives from patient organizations, communities, and public institutions - the Romanian National Alliance for Rare Diseases;

b. To establish a common strategy for tackling the issues related to rare diseases; 

c. To organize an Information Campaign on rare diseases, as part of the National Conference for Rare Diseases;

d. To create a national training programs targeting all stakeholders involved in rare diseases;

           1.6 Activities:

1. Creation of the project team - meeting of the partners of the project, including associations for rare diseases and groups of patients, professionals and representatives from public institutions involved in working with patients with rare diseases to establish the work strategy including establishing goals, objectives, responsibilities, and activities.

2. Identification of the key representatives to be part of the network;

3. Organization of 4 regional level meetings to establish the Romanian National Alliance for Rare Diseases in Zalau, at the Information Center on rare Genetic Diseases;

4. Development of a common strategy of RONARD – with common mission, vision, objectives, and activities, with the guidance of EURORDIS, Ministry of Health, Ministry of Education and Research, Ministry of Labor, Social Solidarity and Family.

5. Organization of a national Information Campaign as part of the National Conferences for Rare Diseases on social aspects of rare diseases including the distribution of informational and recruitment materials, press conferences, motivational advocate speakers;

6. Organization of the National Conference for Rare Diseases, invited speakers from EURORDIS;

7. Distribution of the national strategy on rare diseases;

8. Lobby and advocacy to transform the national strategy on rare diseases into a National Plan for Rare Diseases;

9. Development of a national training program on the basis of the National Plan for Rare Diseases: EURORDIS has agreed to help organize some of the trainings based on their experience, as well as on projects which have been supported by the European Commission.

10. Organization of 4 regional training courses targeting stakeholders involved in diagnosis and management of rare diseases; the general topics covered will be: The importance of patient organizations. Achievements and limits; The activity of RONARD – Data bases, National Plan for Rare Diseases; Reference centers for rare diseases; Most common rare diseases; The role of clinical doctors in diagnosing and following up a patient with a genetic disease; Aspects of medical bioethics in rare genetic diseases, in light of European/Romanian legislation; Orphan drugs;

11. Ongoing monitoring and evaluation of the project and it’s goals and dissemination of project results at national and international level