THE ISABEL GEMIO FOUNDATION FOR RESEARCH OF MUSCLE DYSTROPHIES AND OTHER RARE DISEASESis a non-profit organization that arose from the urgent need for scientific research on a group of degenerative and fatal diseases unknown to our society.
There are two primary goals of this entity: the dissemination and social knowledge of these diseases, and funding of scientific research projects that allow their eradication or cure.
Organizing events, fair trade products and the contribution of individual fees are its current sources of funding.
Neuromuscular Diseases are genetically determined diseases that causeprogressive muscle weaknessand ahigh mortality ratefor patients who suffer it, often children. Neuromuscular diseases are a group of disorders of low prevalence but, as a whole, are the most common group of rare diseases.
Rare diseases, including genetic diseases, are those that are life-threatening or cause chronic disability, having a low frequency or prevalence (less than 5 cases per 10,000 population), as defined by the European Union.
Under this designation, there are thousands of diseases that share common problems: they present many difficulties in diagnosis and monitoring; they have an unknown origin in most cases; they involve multiple social problems; there are few epidemiological data; they pose difficulties in research due to the low number of cases; they mostly lack effective treatments.
Over five thousand diseases, with more than three million persons affected