Showing 2987 results for "hemophilia A"

Filter By

What Happens When the Pandemic Ends?

What’s new, month of May? Why hello there, extended coronavirus lockdown!   Our community quarantine was set to end on April 30. In the last few days of April, I felt so excited to go back to how life was before COVID-19. I missed going out, eating…

NORD Webinar Outlines COVID-19 Response on Financial, Policy Fronts

As the number of Americans infected with COVID-19 surpasses one million, it’s no surprise that people with rare diseases — whose immune systems were generally compromised even before the outbreak — are particularly terrified of this pandemic. That fear is evident in an online survey conducted by the National…

Why We’re Planning to Get a Dog

My husband, Jared, and I recently talked about getting a dog. I’m excited and can’t wait. We spent an entire night flipping through pictures of various dog breeds. We finally managed to narrow down our selection to four possible types. At the top of the list is the Cavalier…

CONSENT FOR SURVEY PARTICIPATION (no-contact)

1. Why is this survey being conducted? The purpose of this survey is to gather information from individuals with hemophilia so that Bionews and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger hemophilia community. 2. What will I do? If…

CONSENT FOR SURVEY PARTICIPATION

Why is this survey being conducted? The purpose of this survey is to gather information from individuals with hemophilia so that Bionews Services and its partners can bring better understanding, advocacy, and provide our readers more relevant editorial content to the larger hemophilia community. What will I do? If you…

Focusing on Myself to Stay Sane

My husband is down with a bleed for the second time since the COVID-19 quarantine began.   It hasn’t even been a week since he recovered from his latest abdominal bleed. We were only starting to settle back into our usual routine. I was happy to…

The Lure of the Open Road

“A River Runs Through It” is one of my favorite movies, but calling it that doesn’t conjure up just how deeply I feel about it. This movie is more than a favorite — it is like a cherished dream. With Robert Redford’s voice richly narrating the story of…

Caring for Yourself Is Not a Selfish Act

I can’t complain too much about my quarantine life. In my home are my husband, Joe, and 14-year-old son, Caeleb. There’s also my 14-year-old spunky, one-eyed, geriatric Corgi mix, Betty. I don’t have to worry about homeschooling little children or entertaining anyone. This is a good thing. But…