We’re the leading resource for those affected by bleeding disorders. You can count on our organization to ensure your voice is heard. It’s with your help that we can make a difference. Learn more and get involved.
Our programs are designed to provide relevant information to support people with bleeding disorders and their families with their ability to make informed choices.
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Fundraisers and events help us raise awareness and generate crucial resources in support of the bleeding disorders community. Join us at our next event and see how you can get involved.
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Our grassroots network is an integral part of our larger community. Team up with us and see what a huge difference a little bit of your time can make.
News & Announcements
San Francisco-based Catalyst Biosciences, Inc. recently announced positive clinical data from the first group of patients participating in an ongoing Phase 1/2 proof-of-concept study in individuals with severe hemophilia B. The trial, which is being conducted at three centers in South Korea, is designed to evaluate Catalyst’s investigative, subcutaneous factor IX (FIX) therapy known as CB 2679d. Catalyst develops its therapies using engineered proteases, enzymes that increase the rate of chemical reactions within cells.
The findings showed the value of collaboration between HTCs, insurers, and speciality pharmacies.
The mission of the Patient Reported Outcomes, Burdens, and Experiences (PROBE) study is to investigate and directly probe patient perspectives on outcomes they deem relevant to their life and care. PROBE aims to develop a new global tool to enhance the direct patient-voice in health care decision-making. The study has partners in both developed and developing countries.
Members of the National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) recently gathered during NHF’s 69th Annual Meeting on August 26, 2017 in Chicago. The meeting generated three new documents related to treatment, therapies, women with bleeding disorders, carriers and emergency room management. These documents, which are listed below, were subsequently adopted by NHF’s Board of Directors on September 17, 2017.
Call your Senator and ask them to vote NO on the Graham-Cassidy bill, which would jeopardize access to healthcare for people with bleeding disorders.