The U.S. Food and Drug Administration (FDA) has approved an update to the label of Alprolix, based on long-term efficacy and safety data from two Phase 3 studies, the B-YOND extension trial and the Kids B-LONG pediatric study, manufacturer Bioverativ announced. This label extension, which adds pediatric data, further supports…
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The U.S. Food and Drug Administration (FDA) recently granted orphan drug status to rofecoxib (TRM-201), an non-opioid investigational pain treatment for hemophilic arthropathy (HA, a hemophilia degenerative joint disease) under development by Tremeau Pharmaceuticals. Rofecoxib is a COX-2 selective non-steroidal anti-inflammatory drug (NSAID) with a well-established efficacy profile. It is…
33 Iron-Rich Foods to Add to Your Diet
It’s important for anyone with a chronic illness to eat a balanced diet, but children and adults with hemophilia should also include iron-rich foods as some of the body’s store of iron is lost during bleeding. MORE: How diet can help with hemophilia management There are two different types of…
This video from The Mighty shares some of the things a person living with a chronic illness might want to carry around with them on a daily basis. MORE: Five benefits of cannabis tea for chronic illnesses The survival pack contains some of the essentials needed to ensure you’re…
Normal in My World
Normal. I’m not exactly sure if I know the definition of normal. I’m thinking that most normal people would probably not suffer from any kind of illness. No allergies, diabetes, pain or infusions would be part of a normal person’s life. When you live with a chronic condition,…
Hemophilia in children is diagnosed at an average age of 9 months, and most children are diagnosed by their second birthday. If your pediatrician suspects your child has hemophilia, you may be concerned about their first appointment with the hematologist. To ease your worries, we’ve put together some tips to help you through…
Don’t Minimize Your Story!
When you live with a chronic illness, it is easy to feel alone. You can get mired in the daily struggle of caring for your loved one, or yourself, and it can quickly become overwhelming. There are days, and even weeks, when life with your illness is manageable,…
Chris Bombardier Readies for Climb of Mount Vinson, Final of 7 Summits, with Help of Octapharma USA
Chris Bombardier, who aims to become the first person with severe hemophiliac to climb what are known as the world’s Seven Summits, is about to conquer his last, Mount Vinson in Antarctica, with the help of Octapharma USA. The New Jersey-based company has given an unspecified grant to Bombardier…
The hemophilia landscape is much different today from 21 years ago, when my first son was born. There were not many choices in products and they all seemed to do the same thing — help with clotting when the body needed it. Over these years, we even went…
How to Create a Family Emergency Kit
The National Center on Birth Defects and Development Disabilities has an online booklet that helps hemophilia patients and their families construct a plan in the event of an emergency. MORE: Initial results from phase 3 hemophilia trial of Emicizumab in children looks promising The plan focuses on all…