Our Mission
The National Bleeding Disorders Foundation (NBDF) 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
CSL Behring, the biopharmaceutical company behind the hemophilia B gene therapy HEMGENIX ® (etranacogene dezaparvovec-drlb), provided an update to the bleeding disorders community regarding the availability of the treatment. In a letter to the hemophilia B community, the company stated that they have “reestablished limited supply in April 2026,” and that they remain committed to actively managing the existing supply.
In a letter sent to healthcare providers, Ferring Pharmaceuticals announced that STIMATE® (desmopressin acetate) nasal spray is expected to be available in the United States beginning October 2026.
Federal:
Medicaid Work Reporting Requirements
The U.S. Food and Drug Administration (FDA) has approved an expanded indication for the hemophilia treatment HYMPAVZI® (marstacimab-hncq) to now include people with hemophilia A or B.
