{"id":2224,"date":"2016-12-07T21:09:25","date_gmt":"2016-12-07T21:09:25","guid":{"rendered":"http:\/\/localhost:81\/sh\/?page_id=2224"},"modified":"2017-03-18T11:18:48","modified_gmt":"2017-03-18T11:18:48","slug":"about-rare-diseasees","status":"publish","type":"page","link":"http:\/\/rda-al.com\/en\/about-rare-diseasees\/","title":{"rendered":"ABOUT RARE DISEASES"},"content":{"rendered":"<p>A rare disease, a disease referred to as &#8220;orphan&#8221; is any disease that affects a small number of the population. Most rare diseases are genetic and are present throughout the life of a person, even if the symptoms do not appear immediately. In Europe a disease or disorder called rare when it affects less than 1 in 2,000 people.<\/p>\n<p>Rare diseases are characterized by a wide variety of symptoms and signs which vary not only from disease to disease, but the patient when the patient we both have the same disease.<\/p>\n<p><strong>CHARACTERISTICOF RARE DISEASES<\/strong><\/p>\n<ul>\n<li>Rare diseases are often chronic, progressive, degenerative and often dangerous to life.<\/li>\n<li>Rare diseases create disabled: the quality of life of patients is often compromised by the lack or loss of autonomy<\/li>\n<li>High level of suffering and pain for the patient and his family<\/li>\n<li>No effective treatments exist<\/li>\n<li>There are about 6000-8000 rare diseases<\/li>\n<li>75% of rare diseases affect children<\/li>\n<li>30% of patients with rare diseases die before age 15 years<\/li>\n<li>80% of rare diseases are identified with genetic origin. Other rare diseases are result of infections (bacterial or viral), allergies and environmental causes, or are degenerative or proliferative.<\/li>\n<\/ul>\n<p>Rare diseases are characterized by a variety of disorders and symptoms that vary not only from disease to disease but also from patient to patient as suffering from the same disease.<\/p>\n<p>Relatively common symptoms can hide a rare disease and can lead to an accurate diagnosis.<\/p>\n<p><strong>RARE DISEASE PATIENTS FRONT OF COMMON PROBLEMS<\/strong><\/p>\n<ul>\n<li>Lack of access to correct diagnosis<\/li>\n<li>Delays in diagnosis<\/li>\n<li>Lack of quality information about the disease<\/li>\n<li>Lack of scientific knowledge about the disease<\/li>\n<li>Severe social consequences for patients<\/li>\n<li>Lack of scientific quality of care<\/li>\n<li>Disparities and difficulties in treatment and in care<\/li>\n<\/ul>\n<p><strong>HOW CAN CHANGE THINGS<\/strong><\/p>\n<ul>\n<li>Applying a comprehensive approach to rare diseases<\/li>\n<li>Developing appropriate policies to public health<\/li>\n<li>By increasing international cooperation in scientific research<\/li>\n<li>Mentioning and exchanging scientific knowledge about all rare diseases, not only to those &#8220;frequent&#8221;<\/li>\n<li>By developing new diagnostic procedures and therapeutic<\/li>\n<li>Increasing public awareness<\/li>\n<li>By facilitating the relationship of patient groups to share the experiences with each other and best practices<\/li>\n<li>Supporting the isolated patients and their parents to create new communities patient or groups of patients<\/li>\n<li>By providing full information to the rare disease community<\/li>\n<\/ul>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>A rare disease, a disease referred to as &#8220;orphan&#8221; is any disease that affects a small number of the population. Most rare diseases are genetic and are present throughout the [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"footnotes":""},"_links":{"self":[{"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/pages\/2224"}],"collection":[{"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/comments?post=2224"}],"version-history":[{"count":3,"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/pages\/2224\/revisions"}],"predecessor-version":[{"id":2331,"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/pages\/2224\/revisions\/2331"}],"wp:attachment":[{"href":"http:\/\/rda-al.com\/en\/wp-json\/wp\/v2\/media?parent=2224"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}