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Students with Bleeding Disorders: IDEA & Section 504

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There are two laws for K-12 students in public schools that may offer support and services for children with a bleeding disorder: The Individuals with Disabilities Education Act (IDEA), and Section 504 of the Rehabilitation Act of 1973. The below chart will help determine which plan may be appropriate for your child. To download our […]

Employment Issues Toolkit

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Whether you have a bleeding disorder yourself or you are a caregiver to someone with a bleeding disorder, it is often a juggling act to live with a chronic condition and maintain your livelihood. This toolkit is comprised of resources from a variety of sources related to employment issues including information about the Family Medical […]

Pain Toolkit

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Pain is a serious medical concern in America.  For those with a bleeding disorder, pain as a result of a bleeding episode can result in acute and/or chronic pain issues.  This toolkit provides resources about many pain related issues in the form of: presentations (recorded webinars, videos) downloads (articles, documents) links to other resources  Note: […]

Pokes & Pain: At A Glance

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pokes and pain

When treating your child’s bleeding condition, there are many ways they might show that they are in pain, even if they can’t say it. This chart, adapted from the Child Life Council’s Comfort Tips & Tricks Handout, can help you recognize when your child is in pain, offer distraction techniques, way to ease their anxiety, and […]

2015 Inhibitor Track Presentations

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At HFA, a core value is listening to the community’s voice  – and the inhibitor community has spoken loud and clear that more in-depth, higher level education was needed for those who are dealing with a long-term inhibitor. With that in mind, an advisory committee began meeting in 2013 to plan an agenda for a […]

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.  

Assisting and Advocating for the Bleeding Disorders Community