{"id":8561,"date":"2023-02-20T16:15:39","date_gmt":"2023-02-20T15:15:39","guid":{"rendered":"https:\/\/centroandaluzalfa1.org\/?p=8561"},"modified":"2023-02-20T16:15:40","modified_gmt":"2023-02-20T15:15:40","slug":"rare-diseases","status":"publish","type":"post","link":"https:\/\/centroandaluzalfa1.org\/en\/rare-diseases\/","title":{"rendered":"Rare Diseases"},"content":{"rendered":"\n

Rare Diseases<\/h2>\n\n\n\n

What are rare diseases?<\/h2>\n\n\n\n
They are chronic diseases, usually of genetic origin.<\/pre>\n\n\n\n
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They affect one in two thousand individuals<\/strong>\r\n\nThe European Organization for Rare Diseases (EURODIS) estimates that there are between 6,000 and 8,000 types of rare diseases.\n\nThese affect about 7% of the European population.\n\nIn addition, it does not affect all countries in the same way, different diseases prevailing in specific locations, due to their genetic nature.<\/pre>\n<\/div>\n<\/div><\/div>\n\n\n\n
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Rare diseases are of great importance in medical and pharmaceutical research<\/h3>\n\n\n\n
It is estimated that 80% of rare diseases are of genetic origin, less frequently they are infectious or immunological.\n\nIn addition, it is identified that more than 25% of them are chronic.\n\nFrom a medical point of view, there are a large number of conditions and symptoms, even when dealing with the same disease.<\/strong>\n\nNormally they tend to affect their physical and mental abilities, as well as affect them emotionally, both patients and family members.\n\nOn the other hand, unfortunately, due to the lack of resources and initiatives, there are more than 400 rare diseases that have no treatment.\n<\/pre>\n<\/div><\/div>\n\n\n\n
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What is the severity of these rare diseases?<\/h2>\n\n\n\n
Obviously, not all rare diseases are serious, but many of them are; in fact, serious and debilitating conditions occur in 65%.\n\nMore than half present motor, sensory or intellectual weakness.\n\nChronic pain is recognized in 20% of diagnosed diseases and 30% of them die before their 5th birthday.\n<\/strong>\nThe low individual prevalence of rare diseases determines less knowledge of them by the medical team, which leads to later and less specific diagnoses.<\/pre>\n\n\n\n
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How does it affect patients?<\/h3>\n\n\n\n
Ignorance, bewilderment and rejection are the most frequent reactions<\/p>\n\n\n\n
Having a rare disease, in addition to the specific circumstances of each pathology, implies other problems for those affected:<\/p>\n<\/div>\n<\/div><\/div>\n\n\n\n