Hemophilia Federation of America is a national nonprofit organization that assists, educates, and advocates for the bleeding disorders community.
My mighty warrior, Caeleb, still has an inhibitor. His Bethesda Unit (BU) is less than one and his half-life is less than four hours, so we have a ways to go. His BU has reached zero a few times, and I was thrilled! It was a victory, and when you live with an inhibitor […]
Dear Addy, I often hear about using social media to engage policymakers and spread awareness to friends. Does this really work? How can I advocate on social media without being annoying or preachy? Signed, Social Media Maven Dear Maven, Social media can be an excellent platform to raise awareness for an issue or cause you […]
For the second year in a row, Shawn Nease organized a charity game of Dungeons & Dragons, a fantasy tabletop role-playing game, to raise money for HFA’s Helping Hands Program. Delves for Donors II: Out for More Blood offered gamers in Maryland and Eastern Pennsylvania the opportunity to purchase a seat in a two-hour […]
Every day we advocate for our children and ourselves. Our advocacy ranges on a small scale such as requesting a drink refill when we need one at restaurant to advocating for our children on a larger scale when requesting a doctor to infuse your child before any sort of x-ray when in an emergency […]
Dear Addy, I recently participated in a state legislative day and left feeling great about what we accomplished. How do I maintain this energy and continue to advocate for the issues I am concerned about? -Eager Advocate Dear Eager, Congratulations on participating in your state legislative day. This is an important way to advocate for […]
This is becoming one of my favorite times of the year to be a bleeding disorders advocate. It’s the time of year when individuals of all ages come together to raise crucial money for the community by participating in walks and bike rides across the country. In 2011, HFA hosted it’s first annual Gears for […]
I sometimes forget how fortunate we are to live in the United States. When Max was younger, we had all the typical issues a child with hemophilia has: excessive bruising, bloody noses, and joint bleeds. I struggled to maintain health insurance, and as he aged, I struggled with navigating his infusions. As we attended more […]
This post first appeared on Vector, a blog of Boston Children’s Hospital an was written by Ellis Neufeld, MD, PhD, a hematologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. ________________________________________________ From new longer-acting drugs to promising gene therapy trials, much is changing in the treatment of hemophilia, the inherited bleeding disorder in which the blood does not clot. […]
In a couple of weeks, the bleeding disorders community will be recognizing Rare Disease Day on February 28, Hemophilia Awareness Month during the entire month of March, and World Hemophilia Day on April 17. These important dates were created to help raise awareness about rare conditions like hemophilia and other bleeding disorders. This year, we are thrilled to partner with the National […]
[glossary_exclude] This past Monday marked the 26th annual World AIDS Day. James W. Bunn and Thomas Netter, two public information officers for the Global Programme on AIDS at the World Health Organization, conceived World AIDS Day in 1987. Since then, messages and proclamations that raise awareness and call for action for an AIDS-free generation are […]
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