World Week of Mitochondrial Diseases has begun

From 16 to 22 September, in 11 countries and 3 continents, 13 associations of patients and families suffering from mitochondrial diseases are and will be active on the territory with events, initiatives, conferences, meetings to raise awareness of these diseases. It is estimated that mitochondrial diseases affect 1 in 5,000 people in Europe, about 15,000 people in Italy.

Mitochondrial diseases are the most common rare genetic diseases in the world. It is estimated that in Europe they affect 1 person in 5000, about 15 thousand cases in Italy with major repercussions, given the severity and complexity of these diseases, on the whole family.
Mitochondrial diseases are a set of very heterogeneous hereditary diseases for which there is still no cure. They have in common the fact that they are determined by the malfunctioning of the mitochondria, the power plants of the cell. When the mitochondria are affected by genetic mutations that do not allow them to produce sufficient energy, the body falls progressively ill, starting with those organs and apparatuses that require more energy, such as the brain, the nervous system, muscles, the heart, sight and hearing. They can occur at any stage of life, already in the first weeks after birth, or in adolescence and adulthood. Each case is different from the others, even within the same family, and all this makes these diseases very difficult to recognize and diagnose.

Now in its 5th edition, the World Awareness Week on Mitochondrial Diseases is a strong moment of reflection for the scientific community involved in the study and treatment of these diseases and for patients, united in a global network to break the wall of silence that too often surrounds rare diseases.
Mitochondrial diseases, the association for over ten years main point of reference in Italy for mitochondrial patients, on the occasion of this week, reiterates the invitation to institutions and public opinion to support scientific research, in order to bridge the gap that separates patients from the discovery of a definitive cure, and to facilitate the development of solutions aimed at improving the quality of life of patients and their families. Mitocon works in network with the most important associations and scientific societies involved in mitochondrial diseases such as AIM – Italian Association of Myology, ERNDIM European Research Network, MMS The Mitochondrial Medicine Society, SIMMENS – Italian Society for the Study of Inherited Metabolic Diseases and Neonatal Screening, SIN – Italian Society of Neurology. Mitocon is also part of the UNIAMO network.

As part of this week, Mitocon promotes local awareness initiatives that started yesterday, September 16 in the city of Padua and will close in Molfetta the day of 22.

The newspapers of our group actively participate in the Campaign to raise awareness of mitochondrial diseases so that the patient is always treated, respected and adequately supported by the institutions.

Devi essere registrato per inviare un commento Entra o registrati