Our Mission
The National Hemophilia Foundation (NHF) Hawaii Chapter is dedicated to finding cures for inheritable blood disorders and addressing and preventing complications of these disorders through research, education, and advocacy enabling people and families to thrive.
Our Mission ... In Action
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Giving you education & support for you and your family is our top priority. Our programs will help you connect with others, give you important information on care, and gain support.
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We fight to protect access to quality healthcare and treatments we need to live healthy lives, but we can't do it without your voice. Discover how you and your family can make a big difference by joining our advocacy efforts.
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We provide year-round events and fundraisers to spread awareness, educate and generate crucial resources in support of our mission. We hope to see you at our next event!
News Articles
On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy. It is approved for the treatment of adults with hemophilia B who currently use factor IX (FIX) prophylaxis therapy, or have current or historical life-threatening hemorrhage, or have repeated, serious spontaneous bleeding episodes.
Historically, many residential substance use disorder (SUD) facilities have denied admittance to individuals with bleeding disorders – the basis of these denials are most often the use of self-administered, intravenous medications such a as factor replacement therapies. The lack of access to residential addiction treatment facilities, can have very serious, even fatal outcomes for bleeding disorder (BD) patients in acute need of help with their addiction.
MEDIA CONTACT:
Ilana Ostrin
212-328-3769
iostrin@hemophilia.org
