The bleeding disorder community has suffered an unimaginable loss: Barry Haarde, the founder of the “Wheels for the World” campaign, passed away over the weekend. Haarde was just 52 years old. MORE: New documentary explores what it’s like living with a bleeding disorder Barry Haarde was born with severe…

Researchers at Emory University School of Medicine have developed a small-scale model system to study bleeding and clotting of wounds. The miniature model also accurately reproduces the alterations observed in hemophilia A patients. Their work, “A microengineered vascularized bleeding model that integrates the principal components of hemostasis”, was published in…

There are some moments in my life while raising two sons with severe hemophilia that I have thought, “Wow! You, Cazandra, have just won the gold medal in the Hemo Mama Bear Olympics!” And there are other times I failed so miserably that I would not have even…

I’m not a football fan, but I do watch the Super Bowl to see the halftime show and the commercials. This year’s game was a good one. I will admit the game riveted me toward the end. When the Philadelphia Eagles kicked their final field goal, stretching their lead…

  There’s a good chance those who don’t have a close connection with hemophilia don’t know much about the disease. Some may know that it’s a bleeding disorder, though they probably don’t know what the outcomes are for those who are diagnosed or how it’s treated. It’s for these…

Second in a series. Read part one here. I have been on medication for my clinical depression for over 25 years. There is no other option. Even throughout my second pregnancy, I took medication under my psychiatrist’s supervision. I’ve never been ashamed to admit my need for medication,…

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…

First in a two-part series. I had never heard of hemophilia until the doctors came into my hospital room the day after my first son, Julian, was born. I soon learned that about two-thirds of those diagnosed with hemophilia are because of a spontaneous mutation. Simply…

Among its corporate goals for 2018 announced recently, Alnylam Pharmaceuticals said it will continue to clinically develop the investigational RNA therapy fitusiran to treat hemophilia. Fitusiran, also known as ALN-AT3SC, is an RNAi therapeutic agent that targets a protein called antithrombin — which inhibits blood clotting — while increasing production of the…

When you have a bleeding disorder, you are part of a community that becomes family. You never completely leave them, and they never leave you. The disorder binds you for a lifetime. When your bleeding disorder wreaks havoc, you tend to reach out to your bleeding disorder family…