Empower Your Journey: Explore the Own Your Path and THRIVE Programs with NBDF's Education Department
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First Sickle Cell Patient to Receive Gene Therapy Featured in NYT
First Sickle Cell Patient to Receive Gene Therapy Featured in NYT
Sickle cell disease is linked to an abnormality in the hemoglobin protein, which normally helps carry oxygen throughout the body via red blood cells. This causes red blood cells, normally disc shaped and flexible enough to travel smoothly in the body, to become rigid and misshapen to resemble a “C” or sickle.
NBDF Supports WFH Statement on ISTH Hemophilia Treatment Guidelines
NBDF Supports WFH Statement on ISTH Hemophilia Treatment Guidelines
The NBDF concurs with WFH’s assessment that the proposed guidelines risk setting hemophilia treatment back 30 years.
Government Relations Update - April 2024
Government Relations Update - April 2024
FDA Approves Second Hemophilia B Gene Therapy Product
FDA Approves Second Hemophilia B Gene Therapy Product
This hemophilia B gene therapy is administered as a one-time intravenous infusion to stimulate the long-term production of clotting factor IX and prevent bleeding.
NBDF News Mention: Sad News of a Mother Charged in Death of 3-Year-Old Chelsea Boy with Hemophilia
NBDF News Mention: Sad News of a Mother Charged in Death of 3-Year-Old Chelsea Boy with Hemophilia
Data provided by the National Bleeding Disorders Foundation (NBDF) was referenced recently in the coverage of a tragic case in Chelsea that took a dark turn for 3-year-old Yael Guardado Prudencio, a child with hemophilia and a seizure disorder.
Take the HTC Patient Satisfaction Survey
Take the HTC Patient Satisfaction Survey
PSS input from affected individuals and families help HTCs identify areas where they may have strengths and where they can improve.
Rebinyn Supplies Restored in 3,000 IU Vial Size
Rebinyn Supplies Restored in 3,000 IU Vial Size
Rebinyn is a recombinant factor IX extended half-life therapy for the treatment of hemophilia B.
Hemophilia B Therapy FDA Approved for Expanded Indication
Hemophilia B Therapy FDA Approved for Expanded Indication
The new indication is based on a phase 3/4 clinical trial in of patients under 12 years of age with severe or moderately severe hemophilia B.
NBDF Celebrates Five Years of Community Voices in Research
NBDF Celebrates Five Years of Community Voices in Research
For Immediate Release
CONTACT:
Carrie Strehlau and Kyla Clark
National Bleeding Disorders Foundation
212-382-3773
kclark@hemophilia.org