The activity of the Haemophillia– Romania Association is based on the social model of disability, on the fact that disability is the social consequence of a disease and, therefore, society is the one that must change in order to ensure the full inclusion of people with special needs and requirements and which needs to develop its own picture of the integration potential of socially vulnerable people.
The Haemophillia– Romania Association represents a non-governmental organization that was founded in 2003 by people responsible and motivated by the implications of the haemophilia diagnosis. Our intentions are to make ourselves known both in Romania and abroad, and in so doing we should be able to help people suffering from haemophilia.
Because in Romania today it is estimated that more than 1600 haemophilia cs live, and some of them have minimal knowledge on the disease, the treatment is generally insufficient, very expensive and is administered only in crisis – in an acute flare – when, practically, hospitalization is required, we decided to find practical educational solutions to stop the development of the disease and to prevent complications.
The person with haemophilia is little known not only by the general public but also by some specialists (educators/teachers, representatives of local and central administrative authorities, etc.), especially in solving their health, social problems, etc. in a concrete manner.
In Romania, there are people with haemophilia who still do not benefit from adequate medical care and prophylactic (preventive) health insurance, lack modern means of information and the families of haemophilia cs are unaware of the genetic implications of the disease. They feel alone, different and believe they don’t have a way to achieve their full lives as people.
By means of its activity, Haemophillia- Romania Association provides consultancy and monitoring to people with haemophilia and their families. The disease is degenerative. Through a permanent collaboration with competent persons and institutions, we are constantly trying to ensure their support.
Moral, educational, material and financial aid is an ever-increasing necessity for people who cannot earn their right to live with dignity! The problems of each of us are important because together we form the Community. We think that this is the time when people are helped, can also help us in return.
“Haemophilia doesn’t wait until morning!”
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