Many people with bleeding disorders find that bleeding-related pain and joint damage impact their quality of life, according to patients and caregivers surveyed in the Hemophilia Experiences, Results and Opportunities (HERO) study conducted by…
It's time to clear up the confusion about half-life of clotting factor. You will leave this session with a deeper understanding of how long factor replacement lasts in a person's body, how it prevents joint bleeds and allows for physical activity,…
The issue of disclosure is not always as straightforward as it might seem. The question of when and how to talk about one's bleeding disorder can be complicated and will arise many times in a person’s life. Watch the online webinar as social worker…
Let’s face it, adolescence is a challenging time even under the best of circumstances. As parents of teens with hemophilia and an inhibitor, one of those biggest challenges, preparing to let go, can be especially difficult. As children grow into…
No matter what setting, be it school, day care or the treatment center, we all want to be the best advocate for our child. But sometimes this is easier said than done. As parents and caregivers of young children with hemophilia and an inhibitor many…
On Friday, November 6th NHF President and CEO Dr Len Valentino discussed the many unanswered questions regarding a COVID 19 vaccine and what it would mean for the world. You can listen to a recording of that webinar here.
We all want an end to this global pandemic, and an effective vaccine is a critical part of finding that path. However, there are many unanswered questions on the effectiveness of the vaccine, how it will be…
Objective:
We conducted a pilot study using a single open-ended question to elicit patient-perceived challenges and management strategies in individuals with bleeding disorders. The de-identified responses and themes expressed in…