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EHE Vakfı: EHE Hastaları ve Aileleri için Etkili Tedaviyi Sürdürmek
EHE Vakfı, kendini Epithelioid Hemangioendotelyoma (EHE) için etkili tedaviyi sürdürmeye ve EHE hastalarını ve ailelerini desteklemeye adamış, kar amacı gütmeyen bir 501c3 kuruluşudur. Vakıf, kan damarlarının iç yüzeyini etkileyen bu nadir kanser türünden etkilenen bir grup birey tarafından 2009 yılında kuruldu.
EHE, vücudun herhangi bir yerinde ortaya çıkabilen nadir bir kanser türüdür, ancak en sık karaciğer, akciğerler, kemikler ve yumuşak dokuları etkiler. Her yıl milyonda bir ila iki kişiye bu hastalık teşhisi konulduğu tahmin edilmektedir. Nadir görülmesi nedeniyle, EHE'li hastalar için sınırlı tedavi seçenekleri mevcuttur.
EHE Vakfı'nın misyonu, bu nadir hastalık hakkında farkındalık yaratmak ve bu hastalıktan etkilenenlere destek sağlamaktır. Vakıf, EHE hastaları için etkili tedaviler geliştirmek üzere tıp uzmanları ve araştırmacılarla yakın işbirliği içinde çalışır.
EHE Vakfı'nın ana hedeflerinden biri, bu hastalık için yeni tedavilere yönelik araştırmaları finanse etmektir. Vakıf, dünyanın dört bir yanındaki önde gelen tıp kurumlarıyla ortaklıklar yoluyla, EHE için potansiyel yeni tedavilere yönelik çığır açan araştırmaları destekleyebildi.
EHE Vakfı, araştırma girişimlerini finanse etmenin yanı sıra hastalar ve aileleri için destek hizmetleri de sunmaktadır. Bu, çevrimiçi forumlar ve yerel destek grupları aracılığıyla bu hastalıktan etkilenen diğer kişilerle bağlantı kurmayı içerir.
Vakıf ayrıca, hastaların tanılarını daha iyi anlayabilmeleri ve tedavi seçenekleri hakkında bilinçli kararlar verebilmeleri için EHE hakkında eğitim kaynakları da sağlıyor. Bu, mevcut olabilecek alternatif tedavilerin yanı sıra klinik deneyler hakkında bilgileri içerir.
EHE Vakfı'nın çalışmalarının bir diğer önemli yönü de bu hastalıktan etkilenenler adına savunuculuk yapmaktır. Vakıf, EHPHILIPENDOENDOTHELIALIOMA gibi nadir hastalıklarla yaşayan bireylerin karşılaştığı zorluklar hakkında farkındalık yaratarak, politika yapıcıları ve sağlık hizmeti sağlayıcılarını yeni tedavi araştırmalarına öncelik vermeye teşvik etmeyi umuyor.
Genel olarak, EHE Vakfı, bu nadir kanser türünden etkilenen bireyler ve aileler için hayati bir kaynaktır. Vakıf, araştırmalara fon sağlama, destek hizmetleri sağlama ve hasta haklarını savunma taahhüdüyle, EHE ile mücadelede önemli bir etki yapıyor.
fightehe.org
