Panel 1 - The right to health of people living with rare diseases Rare Diseases Policy Event on February 10th- 2017 –Geneva - switzerland Panel 1 - The right to health of people living with rare diseases  The contribution of fitima (international fondation tierno & mariam)  Hawa dramé

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 !

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

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

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

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

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