{"id":2365,"date":"2020-03-17T00:00:00","date_gmt":"2020-03-17T00:00:00","guid":{"rendered":"http:\/\/centogene.vl22350.dinaserver.com\/2365"},"modified":"2020-03-17T00:00:00","modified_gmt":"2020-03-17T00:00:00","slug":"dia-de-las-enfermedades-raras-de-centogene-omer-y-alibers-en-la-ciudad-de-mexico-2020-perspectivas-inspiradoras-sobre-las-contribuciones-de-las-organizaciones-de-pacientes-a-las-soluciones-para-los-p","status":"publish","type":"post","link":"https:\/\/www.centogene.com\/es\/centogene-omer-and-alibers-rare-disease-day-event-in-mexico-city-2020-inspiring-insights-on-patient-organizations-contributions-to-solutions-for-patients-in-latin-america\/","title":{"rendered":"D\u00eda de las Enfermedades Raras de CENTOGENE, OMER y ALIBER en la Ciudad de M\u00e9xico 2020: Perspectivas inspiradoras sobre las contribuciones de las organizaciones de pacientes a las soluciones para los pacientes en Am\u00e9rica Latina"},"content":{"rendered":"<ul>\n<li>\n<ul>\n<li>Con motivo del D\u00eda Internacional de las Enfermedades Raras, el 29 de febrero, la Alianza Iberoamericana de Enfermedades Raras, Hu\u00e9rfanas e Infecciosas (ALIBER), la Organizaci\u00f3n Mexicana de Enfermedades Raras (OMER) y CENTOGENE recibieron a pacientes y sus familias, as\u00ed como a defensores de pacientes y profesionales de la salud de toda Am\u00e9rica Latina.<\/li>\n<\/ul>\n<ul>\n<li>Una enfermedad rara es una enfermedad que afecta a menos de 5 de cada 10.000 personas. En conjunto, m\u00e1s personas se ven afectadas por enfermedades raras que por c\u00e1ncer y VIH juntos.<\/li>\n<\/ul>\n<ul>\n<li>Se estima que casi 8 millones de mexicanos padecen alguna enfermedad rara, lo que equivale al 51% de la poblaci\u00f3n.<\/li>\n<\/ul>\n<ul>\n<li>En M\u00e9xico existen alrededor de 180 asociaciones de pacientes de enfermedades raras activas.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p>Ciudad de M\u00e9xico, 29 de febrero de 2020 \u2013 M\u00e1s de 300 participantes se reunieron el s\u00e1bado en el Hotel Marriott Reforma de la Ciudad de M\u00e9xico para concientizar sobre las enfermedades raras en el D\u00eda Internacional de las Enfermedades Raras. Pacientes, familiares de afectados, asociaciones internacionales de pacientes, cient\u00edficos, especialistas m\u00e9dicos y representantes del sector privado compartieron experiencias y debatieron sobre estudios, opciones de diagn\u00f3stico, tratamientos y \u00e1reas de cooperaci\u00f3n.<\/p>\n<p>El evento sirvi\u00f3 como plataforma para discutir el papel de las asociaciones de pacientes y sus valiosas contribuciones para garantizar que los pacientes con enfermedades raras tengan acceso a m\u00e9todos de diagn\u00f3stico tempranos y adecuados, as\u00ed como para discutir el desarrollo de nuevas terapias y el potencial de las redes sociales, as\u00ed como las nuevas tecnolog\u00edas en el campo.<\/p>\n<p>\u201cA\u00fan existe un retraso significativo en el diagn\u00f3stico y el acceso a tratamientos espec\u00edficos para pacientes con enfermedades raras. En muchos casos, transcurren m\u00e1s de 10 a\u00f1os desde la aparici\u00f3n de los s\u00edntomas hasta un diagn\u00f3stico preciso. Esto puede provocar da\u00f1os irreversibles y secuelas\u201d, afirm\u00f3 el Prof. Dr. Atul Mehta, Jefe del Servicio de Hematolog\u00eda del Royal Free Hospital de Londres. \u201cUna v\u00eda importante para acortar la odisea diagn\u00f3stica es ampliar las pruebas de detecci\u00f3n neonatal e incluir las enfermedades raras, en particular aquellas para las que ya existen tratamientos. Como herramienta diagn\u00f3stica de primera l\u00ednea, la prueba de detecci\u00f3n neonatal ofrece una oportunidad \u00fanica y sumamente valiosa para actuar en el mejor inter\u00e9s de nuestros pacientes\u201d, a\u00f1adi\u00f3 el Dr. Juan In\u00e9s Navarrete, Jefe del Departamento de Gen\u00e9tica del Hospital Central del Sur de Alta Especialidad de la Ciudad de M\u00e9xico.<\/p>\n<p>Representantes de asociaciones de pacientes de M\u00e9xico, Brasil, Per\u00fa, Ecuador y Espa\u00f1a, as\u00ed como expertos m\u00e9dicos y representantes de las industrias biotecnol\u00f3gica y farmac\u00e9utica, mantuvieron intercambios fruct\u00edferos y din\u00e1micos sobre diversos temas de gran importancia. \u201cEl reducido n\u00famero de pacientes con enfermedades raras con diagn\u00f3stico verificado y su dispersi\u00f3n geogr\u00e1fica suponen graves obst\u00e1culos para los estudios cl\u00ednicos. Las asociaciones de pacientes pueden desempe\u00f1ar un papel importante para superar estos obst\u00e1culos, participando en la creaci\u00f3n de registros nacionales de pacientes y facilitando la cooperaci\u00f3n con investigadores y la industria farmac\u00e9utica en ensayos cl\u00ednicos y desarrollo de terapias\u201d, destac\u00f3 Karla Luis de Castilla, directora de la organizaci\u00f3n de pacientes de ESPERANTRA en Per\u00fa.<\/p>\n<p>Tambi\u00e9n se debati\u00f3 el papel de las redes sociales y las nuevas tecnolog\u00edas en la mejora de la atenci\u00f3n m\u00e9dica y la calidad de vida de estos pacientes, incluyendo la telemedicina y el uso de aplicaciones en tel\u00e9fonos m\u00f3viles. \u201cEl uso de aplicaciones m\u00f3viles por parte de los pacientes supone un importante empoderamiento en la gesti\u00f3n integral de muchas enfermedades raras. Los pacientes pueden gestionar sus citas, proporcionar datos sobre su calidad de vida y monitorizar su propia evoluci\u00f3n cl\u00ednica, todo lo cual resulta muy \u00fatil para la comunicaci\u00f3n m\u00e9dico-paciente\u201d, enfatiz\u00f3 el Dr. Jordi P\u00e9rez L\u00f3pez, especialista en enfermedades raras y jefe de la Unidad de Enlace y Asesoramiento al Paciente de CENTOGENE.<\/p>\n<p>\u201cEl evento ha puesto de relieve el papel de las asociaciones de pacientes en la mejora de la atenci\u00f3n a los pacientes con enfermedades raras. Al mismo tiempo, nos ha permitido ver cu\u00e1nto queda por hacer. Pacientes, m\u00e9dicos, investigadores, legisladores y la industria farmac\u00e9utica deben aunar esfuerzos para lograr los mejores resultados posibles, concluy\u00f3 el Dr. Jes\u00fas Navarro, presidente de OMER.<\/p>\n<p>El evento en la Ciudad de M\u00e9xico concluy\u00f3 la Iniciativa global del D\u00eda de las Enfermedades Raras 2020 de CENTOGENE, que comenz\u00f3 en Lahore, Pakist\u00e1n y continu\u00f3 hasta Berl\u00edn, Alemania, antes de finalizar en Am\u00e9rica Latina.<\/p>\n<p>M\u00e1s informaci\u00f3n puede <a href=\"http:\/\/www.rdd2020.eu\" target=\"_blank\" title=\"M\u00e1s informaci\u00f3n\">se pueden encontrar en l\u00ednea.<\/a><\/p>\n<h5>Contacto de prensa:<\/h5>\n<p>CENTOGENE<br \/> <a href=\"mailto:press@centogene.com\" title=\"Escribe un correo electr\u00f3nico\">presione(at)centogene(dot)com<\/a><\/p>\n<p>ALIBER<br \/> <a href=\"mailto:aliber@aliber.org\" target=\"_blank\" title=\"Escribe un correo electr\u00f3nico\">aliber(arroba)aliber(punto)org<\/a><\/p>\n<p>\u00d3MER<br \/> <a href=\"mailto:omer.proyectos@gmail.com\" title=\"Escribe un correo electr\u00f3nico\">omer.proyectos(arroba)gmail(punto)com<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>On the occasion of International Rare Disease Day on February 29th, the Iberoamerican Alliance for Rare, Orphan, and Infectious Diseases [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-2365","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>CENTOGENE, OMER, and ALIBER\u2019s Rare Disease Day Event in Mexico 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