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
Mark Skinner, JD was honored with one of the National Bleeding Disorder Foundation’s (NBDF) highest accolades, the Lifetime Achievement Award, at its Bleeding Disorders Conference, held in Orlando, Florida on August 13-15th, 2026.
A Lifetime of Hemophilia Advocacy and Leadership
The National Bleeding Disorders Foundation's (NBDF) impact can be seen across the bleeding disorders community through advocacy, education, research, and programs that support individuals and families with hemophilia, von Willebrand disease, and rare factor disorders at every stage of life. Behind that work is a commitment by the NBDF Board of Directors, a group united by a shared goal of improving the lives of people with bleeding disorders.
Federal:
Funding for Fiscal Year 2027
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.
