Gli Equilibristi HIBM

The Associazione Gli Equilibristi HIBM was founded on 20 April 2012 by two girls suffering from a rare genetic muscular disease, GNE Myopathy, also known as HIBM (Hereditary Inclusion Body Myopathy) or Hereditary Inclusion Body Myopathy. with the aim of creating a network of support for all people with GNE Myopathy.

The activities of the Association Gli Equilibristi HIBM, made up of people with GNE myopathy, only confirmed what we already knew about the situation of those affected by rare diseases: coming into contact with the world of disability and GNE myopathy showed us a reality lacking in information and knowledge.

A disease is defined as rare, as stated on the Rare Diseases Observatory, when its prevalence, defined as the number of cases in a given population, does not exceed a set threshold. In the EU, the threshold is set at 0.05 per cent of the population, or 5 cases per 10,000 people. The number of rare diseases ranges between 7,000 and 8,000. The world of those affected is therefore made up of as many different realities as there are diseases themselves. Realities that often share the same problems and difficulties, which make life for those affected extremely difficult. The absence of treatment or therapies and the lack of knowledge of the disease on the part of doctors create a patient recluse, sometimes forced to hope that someone will be able to give answers to their questions as quickly as possible.