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La National Hemophilia Foundation (NHF) est une organisation à but non lucratif qui travaille sans relâche pour améliorer la vie des personnes atteintes de troubles sanguins héréditaires depuis plus de 70 ans. La mission de la fondation est de trouver de meilleurs traitements et remèdes pour ces troubles, ainsi que de prévenir les complications par l'éducation, le plaidoyer et la recherche.
L'hémophilie est une maladie génétique rare qui affecte la capacité du corps à coaguler correctement le sang. Cela peut entraîner des saignements excessifs et des ecchymoses, qui peuvent mettre la vie en danger dans les cas graves. La NHF offre un soutien et des ressources aux personnes atteintes d'hémophilie et à leurs familles, y compris du matériel éducatif sur la façon de gérer le trouble et de se connecter avec d'autres personnes qui vivent des expériences similaires.
L'un des principaux objectifs de la NHF est de financer la recherche de nouveaux traitements et de remèdes potentiels contre l'hémophilie. Grâce à des partenariats avec des institutions médicales de premier plan à travers le monde, la fondation a pu faire des progrès significatifs dans ce domaine. Au cours des dernières années, plusieurs percées en thérapie génique ont offert de l'espoir aux personnes vivant avec l'hémophilie.
En plus de financer la recherche, la NHF défend également les intérêts des personnes atteintes d'hémophilie aux niveaux étatique et fédéral. La fondation travaille en étroite collaboration avec les législateurs et les décideurs pour s'assurer que les personnes atteintes d'hémophilie ont accès à une couverture de soins de santé abordable et à d'autres ressources nécessaires.
L'éducation est un autre domaine d'intervention clé pour la NHF. La fondation offre une vaste gamme de documents éducatifs sur son site Web, y compris des renseignements sur le diagnostic de l'hémophilie, des conseils pour gérer les symptômes à la maison, des conseils pour voyager en toute sécurité tout en vivant avec l'hémophilie, et bien plus encore. De plus, le NHF organise régulièrement des événements tels que des conférences où les individus peuvent apprendre des experts dans leur domaine sur les nouveaux développements dans les options de traitement ou d'autres sujets pertinents.
Dans l'ensemble, si vous ou quelqu'un que vous connaissez avez reçu un diagnostic de trouble sanguin comme l'hémophilie ou la maladie de von Willebrand (VWD), vous devriez absolument vérifier ce qui se passe à la National Hemophila Foundation! Ils font un travail incroyable pour trouver de meilleurs traitements et remèdes tout en fournissant un soutien et des ressources afin que personne ne se sente seul pendant ce voyage !
hemophilia.org
