Our Mission
The National Bleeding Disorders Foundation (NBDF) Nebraska Chapter is dedicated to finding cures for inheritable blood disorders and addressing and preventing the complications of these disorders through research, education, and advocacy enabling people and families to thrive.
Our Mission ... In Action
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Programs
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
The U.S. Food and Drug Administration (FDA) has approved BEQVEZ™ (Pfizer, Inc.), a new hemophilia B gene therapy product. It is designed with bioengineered adeno-associated virus (AAVs) vectors to introduce a working copy of the factor IX gene. The therapy is administered as a one-time intravenous infusion to stimulate the long-term production of clotting factor IX (FIX) and prevent bleeding. This represents the second hemophilia B gene therapy product to be approved in the U.S.
New documents issued by NBDF’s Medical and Scientific Advisory Council (MASAC) cover a wide range of topics relevant to bleeding disorder patients in the U.S. and abroad. They encompass recommendations for treatment with licensed therapies, chronic pain management and physical therapy, gene therapy terminology, and bleeding disorders diagnosis in women and girls. Also included are two new resolutions challenging international recommendations that could contribute to negative health and quality of life implications for patients.