From donning red gear to flooding social media, supporters are gearing up for World Hemophilia Day 2021 on April 17. The event is focused on raising awareness and understanding of the bleeding disorder that affects about one in 10,000 people globally. Organized by the World Federation of Hemophilia (WFH),…

Women who are hemophilia carriers are at a higher risk of experiencing heavy bleeding after giving birth, particularly those who are not on a prophylactic, or preventive, treatment regimen, a new review study has found. Researchers say these findings indicate that more intensive preventive treatments might benefit carriers about…

The World Federation of Hemophilia (WFH) announced that Takeda has joined its WFH Humanitarian Aid Program, agreeing to large, annual donations of treatments for people with inherited bleeding disorders like hemophilia in developing countries. Takeda,…

AMT-061 (etranacogene dezaparvovec), uniQure’s investigational gene therapy for hemophilia B, likely did not cause the case of hepatocellular carcinoma (HCC) — a form of liver cancer — that led to the program’s clinical hold in December 2020, an investigation has found. The U.S. Food and Drug Administration (FDA) had put the AMT-061…

Mild-to-moderate hemophilia has a significant impact on the physical and psychosocial health, and life quality, of both men and women, according to a recent study. Findings also highlighted the unmet needs of these patient groups, supporting better guidelines and quality of care for people with mild-to-moderate disease, its researchers…

My design prototype for a jewelry piece commemorating hemophilia just rolled off the manufacturing line. The Hemo Ring will be posted on our Instagram store soon, just in time for March, which is Bleeding Disorders Awareness Month. As the owner of a small jewelry business, I revel…

The National Hemophilia Foundation (NHF) is calling for nominations for its Awards of Excellence, which honor members of the bleeding disorders community. The awards are for those who have helped improve the lives of patients with bleeding diseases, including those with hemophilia, through treatment and care, advocacy,…

On Sunday mornings in my home, I usually watch “CBS Sunday Morning,” hosted by Jane Pauley. Last week, an interview caught my eye. The segment featured Dr. Jennifer Doudna, who won the Nobel Prize in chemistry in 2020 along with fellow researcher Emmanuelle Charpentier for developing…

Grab the factor, syringes, butterfly needles, drapes, Band-Aids, self-adherent wrap, sharps container, and tourniquet! These things are usually what comes to mind when we think about hemophilia care. Medical supplies are the first thing we think of when we plan for day-to-day life with hemophilia. Preventing and treating bleeds…

My adult son, Julian, does a wonderful job managing his hemophilia. He infuses twice a week per doctor’s orders, and if he has a breakthrough bleed, he treats as needed. Julian is extremely fortunate, because throughout his 24 years, hemophilia has not been the center of his life. His journey…