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Self-Advocacy Tool: Bleeders’ Bill of Rights

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This tool is about self-advocacy and empowerment. It is a document for us, the people of the bleeding disorders community, as we face major barriers to healthcare access. Use it to remind yourself of your rights, your choices, and your power. The Bleeders’ Bill of Rights identifies the real needs of the bleeding disorders community, in […]

Online Transparency Tool

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When navigating the online ecosystem of the bleeding disorders community, it can be confusing as to which organizations run what site. While some organizations run pages with transparent naming, like HFA’s Facebook page, sometimes it’s not so clear. We developed this tool to shine a light on those pages and resources that may not have […]

Navigating Patient Assistance Programs

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Patient Assistance Programs_Helping Hands

With the uncertainty of healthcare, many in the bleeding disorders community are concerned about the future of cost and access to factor products. Co-payments and out-of-pocket expenses can be devastating on a family’s budget. Many manufacturers of factor products have co-pay assistance programs that can provide a source of relief. Manufacturer Co-Pay Programs Manufacturer Co-pay/Co-insurance […]

Off to College Toolkit

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The road to independence and adulthood often travels through a college town.  In this toolkit, you’ll find resources about preparing and making the transition from high school to campus life.   This toolkit has resources that are specific to living with a bleeding disorder and others that are more general, but are applicable if you or […]

Handouts for “Tackling Pain & Anxiety: Parents as Coaches for Coping” Webinar

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Attached are two handouts (pdf) that compliment HFA Families webinar on August 12, 2014. Click on each image to open and download the document.  

Safety Toolkit for Bleeding Disorders

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To recognize June as National Safety Month, HFA has compiled this list of resources to protect and prevent accidents that can happen whether you have a bleeding disorder or not.  This toolkit has resources that are specific to living with a bleeding disorder and others that are more general.  View these tools as ways to […]

2014 Inhibitor Track Presentations at HFA Symposium

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Through input from the 2013 Symposium and a survey launched in the summer of 2013, HFA heard from the inhibitor community and developed a dedicated inhibitor track at our annual Symposium.  At HFA, a core value is listening to the community’s voice  – and the inhibitor community spoke loud and clear that more in-depth, higher […]

Coping with Sibling Issues Toolkit

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Sibling rivalry isn’t unique to parents raising a child with a bleeding disorder. However, when one child is diagnosed with hemophilia or von Willebrand Disease (vWD), it affects the entire family dynamic. Sometimes unaffected siblings feel resentment, left out, jealous, scared, and confused. This toolkit includes resources intended to help parents deal with what is […]

Tips & Tricks for Smoother Infusions

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Finding a vein to administer clotting factor is not an easy task, especially for children. This resource was created for parents of children with a bleeding disorder to provide helpful tips & tricks for smoother infusions. This extensive list was compiled by families in the bleeding disorders community and medical professionals with years of experience making infusions […]

History of Hemophilia 1940′s – 2000′s

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Those who fail to learn from history are doomed to repeat it.  As we honor our past, it’s important to look ahead to our future. During this year’s Symposium, we debuted a one-of-kind History Room that provided a historical journey of hemophilia over the last 70 years. The purpose of the room was to allow […]

Assisting and Advocating for the Bleeding Disorders Community