Information from patient surveys can help doctors do a better job of managing hemophilia and improving patients’ outcomes, an American study reports. The research, which appeared in the journal Patient Preference and Adherence, was titled “Construct validity of patient-reported outcome instruments in US adults with hemophilia: results from the Pain, Functional…

Hemophilia is a genetic disorder, mainly affecting men, caused by a deficiency in clotting factors VIII (hemophilia A), factor IX (hemophilia B), or factor XI (hemophilia C). Although patients had been previously warned against physical exercises, there are in fact numerous benefits of physical exercise for hemophilia sufferers, according to hog.org. MORE: …

In an interview with Genentech, 13-year-old Beau talks about what it’s like living with the bleeding disorder hemophilia. MORE: Seven recommended books to learn more about hemophilia Beau is just like other boys his age — in his spare time he plays computer games and is…

Researchers at South Dakota State University (SDSU) studying mouse sperm found that drugs such as those used to treat HIV infection suppress L1s, or snippets of DNA that cause gene mutations. L1s are called transposons or mobile genetic elements. They are DNA fragments in the genome that replicate themselves and…

The teenage years are tough for most children but for those living with a chronic bleeding disorder, these years can be extra stressful. When they’re young, most of a hemophilia patient’s needs are met by their parents and they can be suitably supervised to ensure they come to no harm. However,…

Some hemophilia patients may, over time, develop inhibitors which restrict the efficacy of treatment making bleeding episodes more difficult to stop. MORE: Intracranial hemorrhage risk – when to see a doctor According to the Centers for Disease Control and Prevention (CDC), although the majority of people living with…

When young Max Levy had to have a port put in his chest for hemophilia medication, his family nicknamed him Iron Man after one of his favorite Marvel action heroes. The story touched a lot of hearts and was even shared by Robert Downey Jr. on his…

BioMarin Pharmaceutical  will add an additional Phase 3 study to the clinical development of its investigational gene therapy BMN 270 for hemophilia A. BioMarin will conduct two separate trials testing the effectiveness and safety of two different doses of BMN 270. Both trials are expected to initiate in the…

The Hemophilia Foundation of American (HFA) has teamed up with the Centers for Disease Control and Prevention (CDC) to create a survey for hemophilia and bleeding disorder patients who don’t currently receive care from a government-funded hemophilia treatment center (HTC). MORE: Why shared data is important for furthering hemophilia research…

A new hemophilia management program was launched as part of a collaborative agreement between Magellan Rx Management and Health New England to standardize treatment practices and optimize pharmacy and medical benefits use and costs. The goal is to provide better overall quality of care at reduced costs. Among…