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La National Hemophilia Foundation (NHF) recientemente auspició su 17o taller sobre terapia génica, titulado Taller sobre terapia génica con VAA y tecnologías innovadoras: Entender los anticuerpos neutralizantes y el análisis genómico.
Las organizaciones nacionales miembros (ONM) constituyen el corazón de la Federación Mundial de Hemofilia (FMH). La FMH trabaja en estrecha colaboración con sus ONM a fin de brindarles apoyo adaptado a sus realidades y ayudarlas a incrementar el nivel de atención para las personas con trastornos de la coagulación (PCTC) en sus respectivos países. Durante los próximos meses presentaremos en la página de noticias de la FMH los perfiles de varias ONM y mostraremos la labor que llevan a cabo, los desafíos que enfrentan, y la diferencia que marcan en sus países. Hoy entrevistamos a la ONM de Japón, la Red Nacional de Hemofilia de Japón.
Las organizaciones nacionales miembros (ONM) constituyen el corazón de la Federación Mundial de Hemofilia (FMH). La FMH trabaja en estrecha colaboración con sus ONM con el propósito de brindarles apoyo adaptado a sus realidades y ayudarlas a incrementar el nivel de atención para las personas con trastornos de la coagulación (PCTC) en sus respectivos países. Durante los próximos meses presentaremos en la página de noticias de la FMH los perfiles de varias ONM y mostraremos la labor que llevan a cabo, los desafíos que enfrentan, y la diferencia que marcan en sus países. Hoy entrevistamos a la ONM de Siria: La Sociedad Siria de Hemofilia.
El tema del Día mundial de la hemofilia de este año es “Acceso para todos: La prevención de hemorragias como norma de atención a nivel mundial”. Con base en el tema del año pasado, el llamado a la acción para la comunidad en 2023 es unirse a fin de abogar ante legisladores locales y gobiernos por un mejor acceso al tratamiento y la atención, con énfasis en un mejor control y prevención de hemorragias para todas las personas con trastornos de la coagulación (PCTC). Esto significa la implementación del tratamiento en el hogar, así como del tratamiento profiláctico con el propósito de ayudar a estas personas a lograr una mejor calidad de vida.
Dr Emna Gouider is currently a professor of Hematology in the medical university of Tunis El Manar In Tunisia. She is the head of the hemophilia center in Aziza Othmana Hospital in Tunis, which has more than 700 people with bleeding disorders. She has more than 10 years of experience with low dose prophylaxis for treatment of PWH. She is a medical member of the WFH board, and she is involved in several WFH committees. She also has been involved in the Tunisian Association of Hemophilia as a member responsible for medical and scientific affairs since 2001, and organized and conducted several nurse, lab, patient, and musculoskeletal workshops. Improvement of care and quality of life of PWH in her country is one of her main goals.
Born with severe hemophilia B, Prem has been involved in Haemophilia movement in Karnataka and India for over 25 years. He has held various positions in his chapter and the national NMO. He was one of the architects of evidence-based advocacy initiatives in India and played a huge role in establishing the National Hemophilia Registry of Hemophilia Federation (India). Prem has been actively involved in advocating for improvement of treatment and diagnostic facilities in several states of India and led various development projects in HFI. He contributions have led to establishment of several comprehensive hemophilia care centres in the country. Prem is also a member of State Blood Cell, a government decision-making body on blood & bleeding disorders in the state of Karnataka, India.
Alexandra is a global health public affairs professional with 20 years' experience at international, European and national levels in government relations and multi-stakeholders' partnership building, based in Geneva. She has a deep-rooted conviction in patient advocacy, multilateralism and diplomacy to improve global health. She has dedicated her entire career to contribute improving healthcare policies to benefit people living with diseases.   She is the founder & CEO of AHPConsulting, a consultancy specializes in global health public affairs​, whose the mission is to support actions of global health actors by facilitating impactful and thoughtful policy changes. Currently working with the World Federation of Hemophilia, among other global health groups, Alexandra is representing WFH in Geneva, providing strategic oversight regarding the advocacy and engagement strategies of identified Geneva-based stakeholders and contributing to increase awareness of bleeding disorders to help WFH achieve its advocacy goals in line with its overall mission. 
Ekawat Suwantaroj (45), Bangkok, Thailand I was diagnosed with severe Hemophilia A when I was just four months old. I am a Graphic Designer and owner of a graphic designs company in Bangkok. I have been a part of the Thai Hemophilia Society for 20 years. Currently, I am Vice President of the Thai Hemophilia Patient Club and Committee member of the National Hemophilia Foundation of Thailand. Moreover, I have been working with other chronic diseases to set-up a patient group such as the Thai Rare Disease Foundation. I have also joined several international workshops with the World Federation of Hemophilia (WFH) and I volunteer as a co-option committee of World Federation of Hemophilia (WFH). Present: - Co-option committee of World Federation of Hemophilia (WFH) - Vice President of Thai Hemophilia Patient Club (THPC) - Committee of National Hemophilia Foundation of Thailand - Vice President of Healthy Forum (Chronic diseases group) - Committee of Asean Hemophilia Networks (AHN)

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