Hemophilia Federation of America is a national nonprofit organization that assists, educates and advocates for the bleeding disorders community.
Dear Addy, My insurance company is making it increasingly difficult to access the services and products I need to care for my bleeding disorder, which has led to delayed care. How can I report these issues? Signed, Frustrated __________________________________________________________________________________________________________________ Dear Frustrated, You are not alone in your concerns. In August 2015, HFA launched Project CALLS […]
Dear Addy, I have to do a presentation in front of my eighth grade class on a cause I care about. I’d like to focus on bleeding disorders because I have von Willebrand Disease (vWD), but there’s so much information and I don鈥檛 know where to start. Help! Signed, Anxious for an A Dear […]
Dear Addy, I’m concerned about how my bleeding disorder is effecting my mental health. However, it’s not clear that my insurance covers a therapist or counselor so I keep putting off seeking counseling or therapy. How important is mental health and where do I find the correct insurance information? Sincerely, Taking Control _________________________________________________________________________ Dear Control, […]
Dear Addy, I live in rural Wyoming and we do not have a hemophilia treatment center (HTC) in my state. How do I advocate for myself and better treatment at my local doctor鈥檚 office? Sincerely, Western Advocate ______________________________________________________________________________________ Dear Western, Whether you live in a rural or metro area without an HTC, or in a […]
In a couple of weeks, the bleeding disorders community will be recognizing聽Rare Disease Day聽on February 28,聽Hemophilia Awareness Month聽during the entire month of March, and聽World Hemophilia Day聽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聽National […]
For women carrying the hemophilia gene, getting a proper diagnosis is not easy. By definition, if a woman has clotting factor levels less than 50%, she has mild hemophilia. Many women report that medical professionals are still under the assumption that a bleeding disorder can only affect males. It is these challenges that can make […]
Dear Addy, I am frustrated because my insurance company has mandated that its members use a single pharmacy provider. What can be done to stop this denial of choice? Signed, Pharmacy Frustrated< ________________________________________________ Dear Frustrated, Health insurance providers are making this change as a cost savings measure. In order to keep their costs down, and […]
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!
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