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WFH & NHF Issue Joint Statement Regarding Two Deaths Reported in Orphan Disease Gene Therapy Clinical Trial

June 30, 2020

  The following is information from the World Federation of Hemophilia. A joint World Federation of Hemophilia (WFH) and National Hemophilia Foundation (NHF) statement* is issued on two deaths reported in orphan disease gene therapy clinical trial (*on behalf of the WFH Coagulation Product Safety, Supply, and Access Committee): We have become aware of two […]

NHF Plans to go Virtual with Annual Meeting

May 1, 2020

The following is a statement from the National Hemophilia Foundation regarding their annual meeting. The National Hemophilia Foundation鈥檚 priority has always been the health and safety of the bleeding disorders community. As the COVID-19 pandemic unfolds, it is clear that in the face of an unprecedented situation, we need to make difficult decisions to protect […]

How FDA is Putting the Patient Voice at the Forefront of Gene Therapy Clinical Trials for Hemophilia

February 12, 2020

By Najat Bouchkouj, M.D., Bindu George, M.D., and Karen Jackler, MPH A person with hemophilia can experience aspects of their disease that even the most qualified doctors and scientists can鈥檛 fully appreciate. This is why the Center for Biologics Evaluation and Research at the Food and Drug Administration is working to hear and understand the […]

New Study Open To Hemophilia B Community

September 24, 2015

Novo Nordisk, along with the Coalition for Hemophilia B, Hemophilia Federation of America, and National Hemophilia Foundation have announced the B-HERO-S (Bridging Hemophilia Experiences Results and Opportunities into Solutions) study open to all patients with hemophilia B and the caregivers of children with hemophilia B. About the Study Building on the success of the original […]

Update #3: NHF’s MASAC Assessment on Inhibitor Studies

December 3, 2014

On September 24, 2014, the medical journal,聽Blood, came out with a study called,聽Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.聽 This study suggests聽that inhibitor incidence is higher in previously untreated patients (PUPs) with severe hemophilia A that are using聽Kogenate/Helixate.聽 The聽World Hemophilia Federation聽(WHF) issued a聽statement on October 6,聽and another […]

New Study Findings on Young Women and Bleeding Disorders

October 9, 2014

[glossary_exclude] This information was originally sent by the Division of Blood Disorders in the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC) in an email on Wednesday, October 8, 2014.[/glossary_exclude] ____________________________________ Information about bleeding disorders is vital for young women. It can help them recognize […]

‘Blood Transfusion’ Publication Releases Special Edition

May 22, 2014

Blood Transfusion, a quarterly print and online publication of the Italian Society on Transfusion Medicine and Immunohaematology (SIMTI), released a special edition at the WFH World Congress in Melbourne entitled 鈥淗aemophilia Centre Accreditation Systems and Networks of Centres of Expertise for Rare Diseases in Europe and North America鈥. 聽This report supplement reviews current efforts in […]


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