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En abril de 2015, Mafaal Saidy, un padre de familia de Gambia, se comunicó con la Federación Mundial de Hemofilia (FMH) con un sencillo, pero urgente mensaje: su pequeño hijo, Mutala, sufría hemorragias persistentes y dolorosas y no respondía a su tratamiento para la hemofilia A. Una simple solicitud marcó el inicio de una trayectoria extraordinaria para el chico, para sus padres y para la comunidad de trastornos de la coagulación de Gambia.
La terapia génica constituye un hito importante en la formulación de opciones de tratamiento para personas con hemofilia, ya que ofrece la posibilidad de mejorar sus resultados clínicos, inclusive su calidad de vida, mediante una sola infusión. Desafortunadamente, la formulación de esta opción de tratamiento ha enfrentado numerosos desafíos y la comunidad ha sido injustamente criticada, lo que ha generado confusión y restado impulso a actividades más productivas.
La Federación Mundial de Hemofilia (FMH) participó en la 78ª Asamblea Mundial de la Salud (AMS78), la cual tuvo lugar del 19 al 27 de mayo de 2025, en Ginebra, Suiza. A continuación presentamos un resumen de las actividades de cabildeo que la FMH realizó a través de eventos paralelos, y de las declaraciones emitidas durante la AMS78, en la que la FMH representó la voz de la comunidad mundial de trastornos de la coagulación ante la Organización Mundial de la Salud (OMS), sus estados miembros y otros líderes y partes interesadas internacionales en el campo de la atención de la salud.

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