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President World Federation of Hemophilia Cesar Garrido was born in Caracas, Venezuela. He has two sons, one of whom has hemophilia A, which was the impetus for him becoming a committed member of the bleeding disorders community—a commitment which began over two decades ago. In 1996, Garrido became a member of the Venezuelan Association for Hemophilia (AVH). He has held a number of roles in that organization, including being a member of the Board of Directors and Treasurer and Project Manager. At the AVH, he has been key member of several endeavours, including the creation of new diagnostic laboratories in Venezuela, and campaigns for testing and diagnosis of people with hemophilia (PWH) in Venezuela and Latin America. He was also part of national programs which increased access to factor, developed outreach and identification campaigns, increased access to education, and set up regional medical workshops for PWH. At the international level, Garrido was an Advisory Board member of the International Alliance Patient Organization (IAPO) and has been a member of HERO (Haemophilia Experiences, Results and Opportunities) since 2010. He was also a development manager for a strategic alliance of 27 countries from the Americas—called the Coalition of the Americas (CoA)— that was set up to influence public policies. The WFH has been a big part of Cesar Garrido’s life since 1999. He was a member of the Board of Directors from 2002 to 2010 and was most recently lay member from 2014 until his election as President in 2020. He has held a number of important roles at the WFH, including chair of the Accreditation Committee, chair of the Hemophilia Organization Twinnings (HOT) Committee, co-chair of Capacity Building Committee, national member organization (NMO) Vice President, and member of the President’s Strategic Council.
La Cumbre 2023 de la FMH sobre atención integral: Nuevos avances en trastornos de la coagulación y temas musculoesqueléticos (MSK) tendrá lugar del 10 al 12 de mayo de 2023, en Buenos Aires, Argentina. Esta cumbre mundial reunirá a profesionales médicos y del campo MSK, así como a pacientes con trastornos de la coagulación y defensores de la comunidad de todo el mundo.
Con la autorización de comercialización de los primeros productos de terapia génica basados en vectores VAA para la hemofilia A y B, los pacientes, sus cuidadores y profesionales de la salud tienen que considerar muchos elementos al evaluar los beneficios y riesgos en el contexto de marcos de toma de decisiones compartidas.
¡Faltan menos de dos meses para el inicio de la Cumbre 2023 de la FMH sobre atención integral: Nuevos avances en trastornos de la coagulación y temas musculoesqueléticos (MSK)! Del 10 al 12 de mayo de 2023, este importante evento reunirá a participantes de todo el mundo en Buenos Aires, con el propósito de abordar nuevas investigaciones y descubrimientos médicos, y de valorar cuestiones y problemas relacionados con el tratamiento de los trastornos de la coagulación en todas partes del mundo. La cumbre contará con la participación de algunos de los principales expertos mundiales en trastornos de la coagulación.
¡Ya falta poco para el Día mundial de la hemofilia 2023! El tema del evento 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.
El 8 de marzo, Día Internacional de la Mujer, de 8:00 a 9:00 a. m. Horario del Este (EST), la Federación Mundial de Hemofilia (FMH) auspiciará un webinario sobre salud reproductiva en mujeres y niñas con trastornos de la coagulación (MNTC) y las desigualdades que enfrentan en el tratamiento y a atención. La salud reproductiva constituye un tema clave para MNTC, ya que corren un mayor riesgo de muchas complicaciones de salud, entre ellas parto por cesárea, histerectomía no planificada, y parto prematuro, entre otras.
A fin de garantizar que la seguridad de los pacientes permanezca a la vanguardia de la labor que realiza la Federación Mundial de Hemofilia (FMH) hemos creado un registro con el propósito de monitorear la seguridad y eficacia a largo plazo de la terapia génica en personas con hemofilia (PCH): el Registro de Terapia Génica (RTG) de la FMH. El lanzamiento del RTG de la FMH coincide con la aprobación de la terapia génica para la hemofilia tanto por parte de la Administración de Alimentos y Medicamentos de Estados Unidos (FDA por su sigla en inglés), como de la Agencia Europea de Medicamentos (EMA por su sigla en inglés).

Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.