Gli Equilibristi HIBM
The Association Gli Equilibristi HIBM was founded on April 20, 2012 by the will of five young people, two of whom affected by a rare genetic muscular disease, GNE Myopathy (GNE Myopathy), also known as HIBM (Hereditary Inclusion Body Myopathy) or Myopathy Inherited to Bodies Included.
The activity of the Association Gli Equilibristi HIBM made up of people affected by Myopathy GNE , has done nothing but confirm what we already knew about the situation of those suffering from rare diseases. Coming into contact with the world of disability and GNE myopathy, has shown a reality lacking in information and knowledge.
Association becomes essential to provide information, encourage patients to form a group and give awareness of who one is and what, if one believes in it, one can still become. A patient who is not very aware, or completely unaware, may not be able to receive information in a useful way, provide new information, open up to others, make a group, and therefore be able to activate. One of the responsibilities of an association of patients is to ensure that they are and feel protagonists of their own existence, means of spreading awareness about their condition and not mere spectators. Create a link with other patients and with society as a whole, through and in spite of everything.
- Promotion and dissemination of knowledge of GNE Myopathy;
- Promotion of scientific research and prevention;
- Sensitization of doctors, basic and not, so that they become more aware of this pathology;
- Pursuit of social solidarity purposes;
- Support of patients and caregivers;
- Building patient awareness.