Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Multitasking is a way of life in today鈥檚 world.聽 We watch television while cooking dinner and simultaneously helping our children with homework.聽 We reply to email while having several windows on our computer open, all while our cell phone is glued to our ear.聽 When you live with a bleeding disorder you master the art […]
My childhood was relatively normal. I grew up the oldest of three children, had two caring and attentive parents, and did well in school. As a family, we went on regular vacations. I faced many challenges growing up and did not know at the time that they were related to an undiagnosed bleeding disorder. There […]
One of the things that surprised me most about joining the bleeding disorders community was the sense of family.聽 Thomas鈥檚 diagnosis was the first in our family history (although we鈥檇 later find out I鈥檓 a carrier), so the shock of hemophilia was hard to shake, but the open arms we met made it a bit […]
At the very first meeting we had at the Hemophilia Treatment Center (HTC) when Thomas was a week old, Nathan asked the HTC team, “Does the medicine ever stop working? Can you build up antibodies to it?” Not wanting to worry us and having a good track […]
Advocacy used to scare the devil out of me. I avoided anything that had to do with going to my state capitol or writing a letter to a legislator.聽 Advocacy sounded like downright torture and I didn鈥檛 want any part of it. A perspective change came in the […]
Choices are important to the Cleghorn family. Before their son Nicolas was born, Tracy and Lance Cleghorn envisioned a world of possibilities for him. “I want him to do whatever he wants to do, whether that’s play football, play rugby, place lacrosse…” says Tracy. “I want him to make that choice. I don’t want that […]
Julie Mora is a Spanish-speaking mother from Texas. Joe is part of HFA’s Young Leader program and created this video after a program he was a part of at Symposium!
Ryan and EJ share their experiences growing up with hemophilia. The future of our community is hopeful with the advancements in care and support from others who understand!
Terry talks about growing up with hemophilia and how staying active has helped him live a wonderful life!
John Jarratt speaks to a group about growing up with hemophilia. This is a longer piece, so grab a cup of coffee and we promise you will gain some perspective from John’s wisdom!
Anna and Matt have adopted several children, two who have hemophilia. Anna and Matt try to normalize hemophilia as much as they can and realize that Chris and Xander don’t know anything different.
Rocky believes that having hemophilia has provided him with many opportunities and credits his camp family for showing him the right path.
Dennis and Denise have a teenage son with hemophilia, they encourage their son to focus on school because he needs to find a stable job with good insurance.
Pam helped Ann through the diagnosis of her son’s bleeding disorder.
The HFA offers the Dads in Action Program as an educational and social support system designed to provide Dads with a sense of belonging as well as keys to strengthen the family unit.聽 The program focuses on building strong family ties within the context of having a bleeding disorder.聽 Program participants include both fathers of […]
The Forbes family shares their story of visiting the Oval Office.
A Tennessee couple talks about raising their 3 children and juggling their life with hemophilia.
The Cleghorn family shares their story of having a young child with hemophilia.聽 They talk about prophylaxis treatment and transitioning from a portacath to to a vein.
Barry has hemophilia, HIV, and hepatitis C. 聽He discusses the realities of being diagnosed HIV positive as a teenager and the many challenges he has faced throughout his life. 聽Barry hopes by sharing his story he will empower others to share theirs.
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