ISABEL GEMIO'S FOUNDATION FOR RESEARCH AND OTHER MUSCULAR DYSTROPHIES RARE DISEASES is a non -profit organization that arose from the urgent need to scientifically investigate a group of degenerative and fatal diseases unknown to our society.
There are two primary goals of this institution : the dissemination and public understanding of these conditions and funding of scientific research projects that enable its eradication or cure.
Organizing events , fair trade products and the provision of individual fees are current funding source .
Neuromuscular diseases are genetically determined diseases that cause progressive muscle weakness and a high mortality rate for patients who suffer , often children . Neuromuscular diseases are a group of disorders of low prevalence but in its entirety, are the most common group of rare diseases.
Rare diseases, including genetic diseases , those diseases are life-threatening or chronically debilitating , having a frequency or low prevalence ( less than 5 cases per 10,000 population), as defined by the European Union.
Under this denomination thousands of diseases that share common problems include present many difficulties for diagnosis and monitoring , have unknown origin in most cases, involve multiple social problems , there are few epidemiological data pose challenges due research in a few cases , mostly lack of effective treatments.
Over five thousand diseases, with more than three million affected