Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
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!
[vimeo]http://vimeo.com/24180913[/vimeo]
Click here for Lew Collins Story Thank you to Lew Collins and Matrix Health for sharing this story with HFA!
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.
Kyle and Jesse are two boys who live with hemophilia. These two youngsters are showing a great example to their peers about the importance of advocacy!
Reid talks about growing up with hemophilia and the importance of education, self advocacy and social media advocacy.
Pam Smith talks with her heart about raising a son with hemophilia.
This video features Sal Livolsi & Linda Wyman-Collins; helping women with bleeding disorders is close to both of these community members hearts. Sal has a wife and son with hemophilia and Lew talks from personal experience of having a bleeding disorder.
Tony and Janya Roland have a 4 year old son with hemophilia. Jayna grew up with a father who hid his hemophilia and does not want her son to be forced to do the same.
As a new mother, Bert Brown was filled with joy, excitement, hope, and the wonderment of this miraculous experience. Imagine then, as you are recovering, being told by your doctor that the precious baby you just delivered several hours ago has hemophilia, a genetic bleeding disorder.聽 Your world has turned upside down and your thoughts […]
This Voices video from 2010 features the Cieri family from Florida, who all have von Willebrand Disease.聽Each member of the family describes what living with a bleeding disorder is like, the challenges they face, and how it’s helped to make them closer as a family.
By Michael George Bishop My name is Michael George Bishop and I have Hemophilia B with inhibitors. I decided to share my story with the Hemophilia Federation of America (HFA) and “Voices” because I wanted other kids like me, with hemophilia -and those in physical or emotional pain – to know they are not alone […]
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.
Jill & Kathy have supported each other through the toughest of times.
Sean and Lesa talk about their family life and living with a bleeding disorder.
Jim, Gio, and Tim talk about their life as young boys with hemophilia.
Roger, a 67 year old with hemophilia is full of wisdom and life experiences.
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 […]
A Tennessee couple talks about raising their 3 children and juggling their life with hemophilia.
Amy Maeder is a mother of two teenagers with severe hemophilia.聽 Amy is very passionate about improving the lives of her sons and the bleeding disorders community.
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.
[vimeo]http://vimeo.com/7055318[/vimeo] Derick Stace-Naughton, a young man with von Willebrand’s Disease, started the group “Students for the Awareness of Bleeding Disorders.” 聽Derick wants YOU to urge your member of congress to co-sponsor H.Con Res.147. 聽H.Con.Res.147 promotes screening for vWD.
“One Man’s Story” By John Jarratt, M. Ed., L.P.C. Download John’s Story It is my hope that the new millennium will bring about a better understanding of hemophilia and bleeding disorders, along with an improved relationship and collaboration with consumers, chapters, foundations, hemophilia treatment centers, clinics, private practitioners, emergency room personnel, national organizations, and industry. […]
By Laveane Lovelady, Damascus, AR Download Laveane’s Story This story is about me, but it all started when my son Ryan was born August 15, 1989. It was after his birth when I was finally diagnosed with mild Hemophilia A, because he was diagnosed with severe Hemophilia A. My blood pressure had gotten dangerously high […]
The Long Mile by Barry Haarde Download Barry’s Story There was only one more hill to climb as I rounded the corner that brought the finish line into view. I had ridden my bicycle 175 miles since lining up at the starting point back in Houston the day before. After more than 10 hours on […]
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