Social Charitable Public Association “Genom”
According to the World Health Organization, three persons per every ten thousand people suffer from diseases with progressive muscle weakness.
No one knows how many people with myopathy and spinal muscular atrophy live in Belarus, what their life is like and what their needs are: there is no statistics.
Who We Are
We are proactive parents, who registered Social Charitable Public Association "Genom" in 2013. There are 39 children in our database, who suffer from neuromuscular genetic diseases and primarily from spinal muscular atrophy. The figure is notional: diagnosing of the disease is problematic in the Republic of Belarus. The medical practice of simple easing a condition is extremely poor. The names of parents, who have faced this problem, fall under medical confidentiality.
Anna Gerina, Founder and Director of the Association, mother of the girl, named Yana, suffering from spinal muscular amyotrophy type II, says:
"I know from my own experience that it is very important for mothers to understand that they are not alone. I got acquainted with many people via the Internet after I had learned that my child had a disease. I understand that if I give in, no one will do it instead of me. Everybody will just sit back and do nothing, all alone, all concentrated on their own problems, on their own children. The Government doesn't give us any support, from its perspective we are just waste of money. Neither do funds: "our children are not promising." That is, we have children who can not be cured. Despite their condition, the brain indeed functions properly! Thus, we end up being social outcasts."
Drawing public attention to the problems of people with neuromuscular diseases, finding solutions to these problems and providing support for families which they need so badly nowadays.
The activities of the Social Charitable Public Association “Genom” are aimed at
- providing families with NMD children with special food products, rehabilitation means, medicines and other required means;
- organizing leisure activities and working out programmes intended to enhance the life quality of children with NMD;
- ensuring parents have access to the information on brand new methods of NMD diagnostics, treatment and rehabilitation;
- creating a database of children and young people with NDM in the Republic of Belarus;
- cooperating with Governmental and Non-Governmental organizations of the Republic of Belarus in providing support to families with NMD children;
- establishing cooperation with foreign Non-Governmental organizations, dealing with NMD.
We are always open to cooperation with various organizations and we also welcome all your suggestions and questions. You can contact us at firstname.lastname@example.org
Republic of Belarus,
220049 г. Минск,
ул. Игуменский тракт 16-2