In the absence of a governmental strategy for rare diseases in the 18 years after 1990, the most neglected group of diseases in Romania, the social inclusion of these children remains to the private initiative of NGO’s.
The new approach include reduced direct state involvement and searched for alternative sources of funding with a wider participation of the non-governmental sector, involving other social actors
Aim of our work was to focus on the changes in life quality of children with these diseases, after a teamwork and a multidisciplinary approach.
The health of people with disability and the social integration can be improved if they have every opportunity to enjoy family life, education, friendship, access to public facilities and freedom of movement.
Action should be aimed at counteracting helplessness and stigmatization.
We provide expertise and experience in a community organization, which the government services do not possess, as well as increase the delivery of community-based primary health care.