Hemophilia News Today

March 8, 2021March 8, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 5, 2021March 5, 2021

Events Raise Visibility, Support of Bleeding Disorders During Awareness Month

Hemophilia News Today

Activities are underway to mark Bleeding Disorders Awareness Month, set aside each March to call attention to such disorders as hemophilia and von Willebrand disease, and the more than three ... Read more

March 3, 2021March 3, 2021

Experts Identify Unique Hemophilia Challenges, Propose Ways to Overcome

Hemophilia News Today

People with mild to moderate hemophilia, in particular women with the disease, face unique challenges, many that are specifically linked to a lack of information and insufficient engagement with other ... Read more

March 1, 2021March 2, 2021

Fitusiran Dosing in Trials Reduced to Lower Blood-clot Risk

Hemophilia News Today

Sanofi has reduced the dosing of its investigational treatment fitusiran in clinical trials to lower the risk of blood clots in people with hemophilia, according to a joint statement representing ... Read more

February 26, 2021February 26, 2021

FDA Partially Rescinds Indications for BeneFIX and Ixinity

Hemophilia News Today

Owing to conflicting market exclusivity rights, the U.S. Food and Drug Administration (FDA) has partially rescinded its decision to approve BeneFIX and Ixinity for additional indications both therapies received last year ... Read more

February 25, 2021February 26, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

COVID-19 News, Hemophilia News Today

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 24, 2021February 24, 2021

Low Risk of Developing Inhibitors Found for Nuwiq Patients

Hemophilia News Today

Treatment with Octapharma‘s Nuwiq is associated with a low risk of developing inhibitors — antibodies that prevent the medication from working properly — in previously untreated patients (PUPs) with hemophilia ... Read more

February 23, 2021February 23, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

COVID-19 News, Hemophilia News Today

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 22, 2021February 22, 2021

Posture Exercises May Improve Joint Health in Children

Hemophilia News Today

Exercises to control posture could improve joint health in children with hemophilia and should form part of regular rehabilitation programs, a study suggests. The balance disturbances uncovered in the study ... Read more

February 19, 2021February 19, 2021

Efanesoctocog Alfa on Fast Track for Hemophilia A

Hemophilia News Today

The U.S. Food and Drug Administration (FDA) has granted fast track designation to efanesoctocog alfa, an investigational factor VIII (FVIII) replacement therapy for treating hemophilia A, Sanofi, one of the therapy’s ... Read more

February 18, 2021February 18, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Hemophilia News Today

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 17, 2021February 17, 2021

Hemlibra Can Help Manage Bleeding in AHA, Study Finds

Hemophilia News Today

Treatment with Hemlibra (emicizumab) can help to effectively manage bleeding in individuals with acquired hemophilia A (AHA), according to a new study. While clinical trials will need to be done ... Read more

February 15, 2021February 16, 2021

Preventive Advate Found Better Than On-demand Treatment in Hemophilia A

Hemophilia News Today

When given as a prophylactic, or preventive therapy, Advate worked better than on-demand treatment at lowering the number of spontaneous bleeds in people with moderate or severe hemophilia A, according ... Read more

February 12, 2021February 12, 2021

Nasal Desmopressin Recall Affects Availability Through 2023

Hemophilia News Today

An internal investigation conducted by Ferring Pharmaceuticals into its recently recalled desmopressin nasal spray formulations found an issue with the tightness of the bottle seal. Measures taken to prevent recurrence of ... Read more

February 10, 2021February 10, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

COVID-19 News, Hemophilia News Today

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more