What do we do

What is a rare disease?

Little or nothing we know of these diseases called rare, by minority and infrequent. And yet, there are more than 7,000 and any of us can develop them.

The Rare Diseases , including those of genetic origin, are those diseases with danger of death or chronic disability, which have a low frequency or prevalence (less than 5 cases per 10,000 inhabitants), according to the definition of the European Union.

Today, there is a lack of medical response and serious diagnostic problems.

Goals

The ISABEL GEMIO FOUNDATION for the Research of Muscular Dystrophies and other Rare Diseases </ b> directs its efforts initially to the following aspects:

• Financing and promotion of openings of Scientific Research Projects for the study of rare diseases.
• Contribution to the training of researchers and professionals . Essential to offer a correct diagnosis and progress quickly in the study and research of less frequent diseases.
• The integration of tools and knowledge methods that increase the efficiency of the treatments: creation or adaptation of the existing laboratories, creation and maintenance of bio-banks, databases of patients and cataloging of the diseases.
• Dissemination of the research work and general aspects </ b> that may be of interest to affected patients and relatives.
• Support for patient associations, the search for synergies and joint actions with other entities </ b> for similar purposes.
• Attention to those affected and their families within the scope of the Foundation’s competences.