Jennifer Lynne

1 week ago | hemophilianewstoday.com | Margarida Maia |Jennifer Lynne |Marisa Wexler |Mary Chapman

World Hemophilia Day is April 17, and this year it will focus on the challenges of women and girls living with hemophilia and other bleeding disorders. The World Federation for Hemophilia (WFH) said the theme of its campaign is “Access for all: women and girls bleed too.”“Today, women and girls are still underdiagnosed and underserved,” the foundation says on its World Hemophilia Day website.

3 weeks ago | hemophilianewstoday.com | Jennifer Lynne |Joe MacDonald |Cazandra Campos- MacDonald

It’s that time of year again when brackets are busted, Cinderella stories happen, and basketball fans everywhere are glued to the television for the madness of March. The NCAA basketball tournament is full of buzzer-beaters, heartbreak, and jaw-dropping comebacks. And oddly enough, for many of us living with bleeding disorders, it all feels strangely familiar. This year, I filled out my bracket with optimism, placing my hopes in the Wisconsin Badgers.

1 month ago | hemophilianewstoday.com | Andrea Lobo |Esteban Cerezo |Margarida Maia |Jennifer Lynne

About 30% of people hospitalized due to acquired hemophilia have a bleeding event, while 17% report a thrombotic, or blood clot-related complication, such as stroke and deep vein thrombosis, a nationwide U.S. study finds. Patients ages 65 years and older, and those with thrombotic events were more likely to die during a hospitalization. Also, about a third were readmitted within 30 days of being discharged, mainly due to bleeding events and infections.

1 month ago | hemophilianewstoday.com | Jennifer Lynne |Jacob Harney |Cazandra Campos- MacDonald |Joe MacDonald

There have been many moments in my life when I’ve blatantly thought, “If I die bleeding, I die bleeding.” Of course, I didn’t want to think that, but I felt like I had no other choice. When doctors brush off your bleeding, when you’re told, “You’re “just anemic,” when specialists insist that “women don’t have hemophilia and they aren’t bleeders” — it wears you down. It’s exhausting and infuriating. And for countless women with bleeding disorders, it’s also terrifying.

1 month ago | hemophilianewstoday.com | Lindsey Shapiro |Jennifer Lynne |Joe MacDonald |Cazandra Campos- MacDonald

The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the changing unmet needs and challenges faced by rare disease patients over time, according to the nonprofit.