1. Panel 1 - The right to health of people living with rare diseases
Rare Diseases Policy Event
on February 10th –Geneva - switzerland
Panel 1 - The right to health of people living with rare diseases 
The contribution of fitima (international fondation tierno & mariam) 
Hawa dramé

2. INTRODUCTION
Rare diseases are a reality all over the world and African countries are not spared. In this region of the world, the lack of information, screening and management associated with the economic precariousness in which populations live aggravate the seriousness and the consequences of these pathologies !

3. A – BARRIERS and discriminations
Socio-cultural burdens
Patients are hidden by their families
Deprived of medical care, paramedical and educational
Weakness of the health system
Low number of hospitals and doctors – medical devices and surgery not available
Weakness of a social security system and inegalitarian system
Difficulties in accessing medicines 
Lack of information on rare diseases and weakness of infrastructures

4. CONSEQUENCES
the lives of hundreds thousands of patients with rare diseases and disabilities are in danger.

5. contribuTION OF FITIMA for right to health
*Countries of intervention:
Burkina Faso and
Guinea
*ROAMY (West African network)
Founded in 2003
Human Rights approach:
Protection of Children and Women

6. FITIMA Areas of intervention - Handicap - Community Development
Occupational Therapy
Speech therapy
Hydrotherapy

7. Official launch of the training on "Women's Rights"
WOMEN RIGHTS PROMOTION Training on Women's Rights Literacy Income-Generating Activities
Official launch of the training on "Women's Rights"
Training, Nutrition
Family photo
Literacy