On World Rare Disease Day, information and hope

Today February 28th is the World Day for Rare Diseases and the Spanish Federation of Rare Diseases (FEDER) wants to raise awareness and sensitize the population about RD, but also to send a message of hope. In Spain about three million people suffer from one of the RD, from Top Doctors we want to join this message of hope for all of them and their families.

It is considered a RD when it affects less than 5 out of every 10,000 inhabitants, and in 80% of cases its origin is genetic, according to data from the FEDER and the Spanish Society of Family and Community Medicine (semFYC). Although it is difficult to generalize, they are usually serious chronic diseases, usually degenerative, and significantly affect the quality of life of those who suffer from them. Their hope for a cure lies in research, but we can all help to integrate them and make their lives better. According to data from FEDER, 75% of people feel discriminated against at least once because of their disease. The main areas in which people feel discriminated against are in the enjoyment of their leisure (32%), health care (32%), education (30%) and activities of daily living (30%).

Stargard’s disease is one of the RD which, in this case, is an ocular pathology suffered by one in every 100,000 inhabitants, according to the Institut de la Màcula i la Retina, a Top Doctors center of excellence. The medical team at the Institut de la Màcula i la Retina led by Dr. Jordi Monés, member of Top Doctors, ophthalmologist and macula, retina and vitreous specialist at the Institut attached to the prestigious Teknon Medical Center of the Quirón Hospital Group and, in close collaboration with the Barcelona Macula Foundation: Research for Vision, has been researching a cure for this disease for years.

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TVE Telethon

Next Sunday, March 2, TVE will hold a telethon for RD under the slogan Todos somos raros, todos somos únicos (We are all rare, we are all unique). A good opportunity to help those affected by RD, although not the only one, you can always collaborate through FEDER.