The Minister of Health and Social Services, Sara García Espada, reported this Tuesday in Badajoz that in Extremadura there are about 60,000 people suffering from a rare disease, which in most cases is “chronic, degenerative or disabling” , and assures that “ there are few curative treatments.
García Espada, who made these statements during the inauguration of the Forum on Rare and Undiagnosed Diseases in Extremadura, explained that, according to estimated data, there are between 5,000 and 8,000 rare diseases that affect 6 or 8 percent of the population.
Therefore, the counselor regrets the “lack of information and the scarcity of research” that can help offer a quick and accurate diagnosis and says that, in many cases, the patients themselves know the best about the disease and “more know than the. average patient.”
Extremadura, as the advisor remembers, has a Comprehensive Plan for Rare Diseases that tries to improve the quality of life of patients and “ensure adequate management of social and health resources that guarantee accessibility, quality and equity in care for the affected people and their families.
In addition, he emphasized the importance of this forum that makes visible and offers alternatives that improve the diagnosis and management of rare diseases, in addition to the formation of “support and communication networks between patients and families, association, doctors and all people interested in supporting this cause.”
Finally, Sara García reiterated the commitment of the Government of Extremadura to the prevention, early diagnosis and fairness of these diseases, the regional Executive reported in a press release.