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Ulusal Hemofili Vakfı (NHF), 70 yılı aşkın bir süredir kalıtsal kan hastalıkları olan kişilerin yaşamlarını iyileştirmek için yorulmadan çalışan, kar amacı gütmeyen bir kuruluştur. Vakfın misyonu, bu rahatsızlıklar için daha iyi tedaviler ve çareler bulmak ve ayrıca eğitim, savunuculuk ve araştırma yoluyla komplikasyonları önlemektir.
Hemofili, vücudun kanı düzgün bir şekilde pıhtılaştırma yeteneğini etkileyen nadir görülen bir genetik hastalıktır. Bu, ciddi vakalarda yaşamı tehdit edebilecek aşırı kanama ve morarmaya yol açabilir. NHF, hemofili hastaları ve aileleri için, bozukluğun nasıl yönetileceği ve benzer deneyimlerden geçen diğer kişilerle nasıl bağlantı kurulacağı konusunda eğitim materyalleri dahil olmak üzere destek ve kaynaklar sağlar.
NHF'nin birincil hedeflerinden biri, hemofili için yeni tedaviler ve potansiyel tedaviler konusundaki araştırmaları finanse etmektir. Vakıf, dünyanın dört bir yanındaki önde gelen tıp kurumlarıyla ortaklıklar kurarak bu alanda önemli ilerlemeler kaydetmeyi başardı. Son yıllarda, gen terapisinde hemofili ile yaşayan insanlara umut veren birçok gelişme olmuştur.
Araştırmayı finanse etmenin yanı sıra, NHF ayrıca hem eyalet hem de federal düzeylerde hemofili hastaları adına savunuculuk yapmaktadır. Vakıf, hemofili hastalarının uygun fiyatlı sağlık hizmeti kapsamına ve diğer gerekli kaynaklara erişimini sağlamak için yasa koyucular ve politika yapıcılarla yakın işbirliği içinde çalışır.
Eğitim, NHF için bir başka önemli odak alanıdır. Vakıf, web sitesinde hemofilinin nasıl teşhis edildiğine dair bilgiler, evde semptomları yönetmek için ipuçları, hemofili ile yaşarken güvenli seyahat etme tavsiyeleri ve çok daha fazlası dahil olmak üzere çok çeşitli eğitim materyalleri sunmaktadır. Ek olarak, NHF, bireylerin kendi alanlarındaki uzmanlardan tedavi seçeneklerindeki yeni gelişmeler veya diğer ilgili konular hakkında bilgi edinebilecekleri konferanslar gibi düzenli etkinliklere ev sahipliği yapmaktadır.
Genel olarak, size veya tanıdığınız birine hemofili veya von Willebrand hastalığı (VWD) gibi bir kan hastalığı teşhisi konduysa, Ulusal Hemofili Vakfı'nın neler olup bittiğini kesinlikle kontrol etmelisiniz! Bu yolculuk sırasında kimsenin kendini yalnız hissetmemesi için destek ve kaynaklar sağlarken daha iyi tedaviler ve tedaviler bulmak için harika çalışmalar yapıyorlar!
hemophilia.org
