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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.
On April 2, 2024, 8 News Now covered our Las Vegas Chapter's Winter Wine Walk with Stephanie Dupree.
On April 2, 2024, 8 News Now covered our Las Vegas Chapter's Winter Wine Walk with Stephanie Dupree.
A new review published in the European Journal of Haematology describes the challenges inherent in managing both bleeding and excessive clot risk in patients with primary immune thrombocytopenia (ITP).
A new review published in the European Journal of Haematology describes the challenges inherent in managing both bleeding and excessive clot risk in patients with primary immune thrombocytopenia (ITP).
For Immediate Release
CONTACT:
For Immediate Release
CONTACT:
Financing a higher education poses considerable challenges, especially as yearly tuition and other school-related costs continue to rise. For many individuals and families considering a higher education, awareness of any opportunities to defray those costs is critical. In addition, because decisions about school can have both near-term and long-term implications, it is also helpful to understand the many financial variables.
Financing a higher education poses considerable challenges, especially as yearly tuition and other school-related costs continue to rise. For many individuals and families considering a higher education, awareness of any opportunities to defray those costs is critical. In addition, because decisions about school can have both near-term and long-term implications, it is also helpful to understand the many financial variables.
U.S. Hemophilia Treatment Centers (HTCs) are once again participating in the National HTC Patient Satisfaction Survey (PSS). It is launched every three years to help glean valuable feedback from HTC patients and caregivers, with the overarching goal of enhancing care. Participants in the PSS often include people with hemophilia, von Willebrand disease, and other inherited bleeding disorders.
U.S. Hemophilia Treatment Centers (HTCs) are once again participating in the National HTC Patient Satisfaction Survey (PSS). It is launched every three years to help glean valuable feedback from HTC patients and caregivers, with the overarching goal of enhancing care. Participants in the PSS often include people with hemophilia, von Willebrand disease, and other inherited bleeding disorders.
A new paper published in The Lancet Haematology journal includes data from the HOPE-B clinical trial program that is investigating the hemophilia B gene therapy etranacogene dezaparvovec – the product’s commercial name is Hemgenix® (CSL Behring).
A new paper published in The Lancet Haematology journal includes data from the HOPE-B clinical trial program that is investigating the hemophilia B gene therapy etranacogene dezaparvovec – the product’s commercial name is Hemgenix® (CSL Behring).
The HANDI Resources Center Team is pleased to announce new 2024 scholarship opportunities available for the bleeding disorders community!
The HANDI Resources Center Team is pleased to announce new 2024 scholarship opportunities available for the bleeding disorders community!
Government Relations Update – March 2024
Federal: NBDF’s 2024 Washington Days was held March 6-8. NBDF is grateful to the more than 400 volunteer advocates from forty-four states who participated in the 231 meetings with Members of Congress and the state advocacy training. This year’s priority issues are the HELP Copays Act (HR 830/S 1375), appropriations for NIH and CDC programs, and federal action addressing commercial health plans’ narrow prescription drug formularies and exclusions.
State
NBDF recently learned that Novo Nordisk now has 3,000 IU vial size of Rebinyn® back in stock. Rebinyn is the company's recombinant factor IX extended half-life therapy for the treatment of hemophilia B. It is indicated for the on-demand treatment and control of bleeding episodes and the management of bleeding around surgery. It is also indicated for routine prophylaxis to reduce the frequency of bleeding episodes.
The U.S. Food and Drug Administration (FDA) has approved a supplemental Biologics License Application for IXINITY® (Medexus), a recombinant factor replacement therapy to treat patients with hemophilia B.
The new approval expands the product indication to include the on-demand, prophylactic, and perioperative treatment of children under 12 years of age. The previous indication was limited to adults and older children more than 12 years of age.
For Immediate Release
CONTACT:
Carrie Strehlau and Kyla Clark
National Bleeding Disorders Foundation
212-382-3773
kclark@hemophilia.org%C2%A0" title="Email for Kyla Clark">kclark@hemophilia.org
National Bleeding Disorders Foundation Celebrates Five Years of Community Voices in Research
