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La National Hemophilia Foundation (NHF) è un'organizzazione senza scopo di lucro che lavora instancabilmente per migliorare la vita delle persone con malattie del sangue ereditarie da oltre 70 anni. La missione della fondazione è trovare trattamenti e cure migliori per questi disturbi, nonché prevenire complicazioni attraverso l'istruzione, la difesa e la ricerca.
L'emofilia è una rara malattia genetica che colpisce la capacità del corpo di coagulare correttamente il sangue. Ciò può portare a sanguinamento eccessivo e lividi, che possono essere pericolosi per la vita nei casi più gravi. Il NHF fornisce supporto e risorse per le persone con emofilia e le loro famiglie, inclusi materiali educativi su come gestire il disturbo e connettersi con altri che stanno attraversando esperienze simili.
Uno degli obiettivi principali del NHF è finanziare la ricerca su nuovi trattamenti e potenziali cure per l'emofilia. Grazie alle partnership con le principali istituzioni mediche di tutto il mondo, la fondazione è stata in grado di compiere progressi significativi in questo settore. Negli ultimi anni, ci sono state diverse scoperte nella terapia genica che offrono speranza per le persone che vivono con l'emofilia.
Oltre a finanziare la ricerca, l'NHF sostiene anche le persone affette da emofilia sia a livello statale che federale. La fondazione lavora a stretto contatto con legislatori e responsabili politici per garantire che le persone con emofilia abbiano accesso a una copertura sanitaria a prezzi accessibili e ad altre risorse necessarie.
L'istruzione è un'altra area di interesse chiave per la NHF. La fondazione fornisce una vasta gamma di materiali educativi sul suo sito web, comprese informazioni su come viene diagnosticata l'emofilia, suggerimenti per la gestione dei sintomi a casa, consigli su come viaggiare in sicurezza mentre si vive con l'emofilia e molto altro. Inoltre, l'NHF ospita eventi regolari come conferenze in cui le persone possono apprendere da esperti nel loro campo sui nuovi sviluppi nelle opzioni di trattamento o su altri argomenti rilevanti.
Nel complesso, se a te o a qualcuno che conosci è stata diagnosticata una malattia del sangue come l'emofilia o la malattia di von Willebrand (VWD), allora dovresti assolutamente controllare cosa sta succedendo alla National Hemophila Foundation! Stanno facendo un lavoro straordinario per trovare trattamenti e cure migliori, fornendo anche supporto e risorse in modo che nessuno si senta solo durante questo viaggio!
hemophilia.org
