Receive Our Newsletter

Cazandra_Moms Blog_Inhibitor

Infusing Love: Celebrations & A Heavy Heart

My son Caeleb has struggled with an inhibitor since he was 11 months old.  Despite many doctors’ recommendations, it’s never been as “simple” as waiting to get below a 10 Bethesda Unit measurement to start immune tolerance therapy (ITT).  He developed a rare allergy to Factor VIII and there is no known treatment or protocol […]

medical_news

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

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

medical_news

Update #1: Study Suggests Higher Inhibitor Incidence in PUPS Using Kogenate/Helixate

On September 24, 2014, the medical journal, Blood, came out with a study called, Recombinant Factor VIII Products and Inhibitor Development in Previously Untreated Boys with Severe Hemophilia A.  This study suggests that inhibitor incidence is higher in previously untreated patients (PUPs) with severe Hemophilia A that are using Kogenate/Helixate (Bayer/Nexgen). Click here to read the […]

Debbie_Inhibitors

An Inhibitor Mom Shares Her Story With the FDA

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]

FDA_Logo

FDA Hosts Patient-Focused Meeting

  On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA.* HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out […]

Leveling with the FDA About Hemophilia Inhibitors

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to […]

Adult Male Disccuses Pain Management and Treatment with FDA

On Monday, September 22, several members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA. HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to share […]

Medical research

Researchers Prevent Inhibitors in Mice with Hemophilia

New and exciting news recently published in the journal Blood about a possible method to prevent and treat inhibitors. A University of Pennsylvania researcher has successfully prevented inhibitors from forming in mice with hemophilia by using a plant-based drug to teach the immune system to tolerate clotting factors. Read this University of Pennsylvania  press release in its entirety. ____________________________ […]

Inhibitor_Pull Quote

Journal of Blood Medicine: Inhibitor Challenges

Inhibitors are antibodies that the immune system develops because it sees the infused clotting factor as a foreign substance that needs to be destroyed. Antibodies are proteins that eat up the activated factor before it has time to stop the bleeding. Approximately 30% of people with severe Hemophilia A are affected by inhibitors at some […]

Industry News

Octapharma’s Hemophilia A Product Approved in Europe

The European Commission has published approval of Octapharma’s Nuwiq ® (simoctocog alfa) for the treatment and prophylaxis of bleeding in all age groups with hemophilia A (congenital factor VIII [FVIII] deficiency). Nuwiq ® is the newest generation of FVIII replacement, produced in a human cell line cultured without additives of human or animal origin. Nuwiq […]

Page 2 of 3123

Assisting and Advocating for the Bleeding Disorders Community