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How These Bruises Make for Better Conversation

My husband, Jared, gets a lot of bruises. Not because he gets into brawls a lot, and most certainly not because we fight (although we like to troll people with these possibilities just for fun — dark humor, we know). His quick bruising is because he has severe…

Why I Say ‘Yes’ to the Bleeding Disorders Community

Recently, I opened an email from a company inviting me to share my insights regarding bleeding disorders and how my family handles the struggles of chronic illness. Before my sons were born, I think I would’ve hit the delete button without giving a similar invitation a second thought. But…

BioMarin Resubmits Request to FDA for Roctavian’s Approval

BioMarin Pharmaceutical has resubmitted an application to the U.S. Food and Drug Administration (FDA) seeking approval of Roctavian (valoctocogene roxaparvovec), potentially the first gene therapy for adults with severe hemophilia A. The FDA delayed the company’s initial approval request in 2019, with the agency requiring two more…