Con el lema "2020, por la inclusión de las Enfermedades Huérfanas" se conmemora en el país el Día Mundial de las Enfermedades Raras
En el Registro Nacional de Pacientes con enfermedades huérfanas se encuentran alrededor 50.000 personas que padecen estas enfermedades. Bogotá, 28 de febrero de 2020. Cada 29 de febrero se celebra el Día Mundial de las Enfermedades Raras-Huérfanas, esta conmemoración tiene el objetivo de sensibilizar a la población en general, las sociedades científicas y a las instituciones públicas y privadas acerca de la importancia de su diagnóstico oportuno y tratamiento integral para mejorar la calidad de vida de las personas afectadas.Desde la Ley 1392 de 2010 en Colombia se reconocen las enfermedades raras-huérfanas como de especial interés y se adoptan normas tendientes a garantizar la protección social por parte del Estado a la población. A partir de esta reglamentación se ha priorizado el evento Enfermedades Raras-Huérfanas en el Sistema de Vigilancia en Salud Pública. El listado oficial de las enfermedades huérfanas que son reconocidas en el sistema de salud colombiano se ha actualizado en tres oportunidades como lo establece la Ley. El más reciente (Resolución 5265 de 2018) establece que son 2.190 las enfermedades codificadas e incluidas en el actual listado.El Registro Nacional de Pacientes con Enfermedades Huérfanas reporta 52.753 casos confirmados en el país, las primeras diez enfermedades que concentran el 32% del total de los casos registrados, en su orden se encuentran: la Esclerosis Múltiple, el déficit congénito del factor VIII, la enfermedad de Von Willebrand, síndrome de Guillain-Barré, miastenia grave, displasia broncopulmonar, drepanocitosis, esclerosis sistémica cutánea difusa, la enfermedad de Crohn y fibrosis quística. Food Here are some of the better attractions you must see on your visit to Vegas: Hoover Dam and the Grand Canyon: Book yourself a seat on any of the many sightseeing tours available and go and watch the architectural marvel that is Hoover Dam built over the Grand canyon which is also a grand sight to see by itself. Black Canyon is another must see as is Lake Mead which is so beautiful just because it is a body of water all surrounded by desert-like nature. Colorado River:While looking at the Dam and Canyon is from above, to see the true beauty of the river, you have to go down. The Colorado river is excellent for river-rafting and water sports, but you do not have to take part if it is not your thing. Instead just sit back and enjoy another of nature’s marvels. Daniel hosts in Yogyakarta to earn extra money Many people would say that it is absolute madness to keep on doing the same thing, time after time, expecting to get a different result or for something different to happen. Hoover Dam and the Grand Canyon: Book yourself a seat on any of the many sightseeing tours available and go and watch the architectural marvel that is Hoover Dam built over the Grand canyon which is also a grand sight to see by itself. Black Canyon is another must see as is Lake Mead which is so beautiful just because it is a body of water all surrounded by desert-like nature. Colorado River:While looking at the Dam and Canyon is from above, to see the true beauty of the river, you have to go down. The Colorado river is excellent for river-rafting and water sports, but you do not have to take part if it is not your thing. Instead just sit back and enjoy another of nature’s marvels. Bonnie Springs Who can not resist going to one of the old towns like those in the Western gun slinging movies? Your destination needs to be Old Nevada. There you can delight in an old western town right in the middle of Red Rock Canyon. They host western shootouts too so come prepared, partner! I could go on and on about other attractions like the theme park in Circus Circus, the Gilcrease Nature Sanctuary, the Henderson Bird Viewing Preserve and Mt. Charleston but I think you get the picture. In Las Vegas and hate gambling? Do not despair. Just go out and have some clean un-gambling fun.
