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Additional Resources

This area of the HFA Resource Library includes tools and stand-alone resources that are not necessarily included within our toolkits.

pokes and pain Pokes & Pain: At A Glance: 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 proven comfort infusion positions complied by parents of children with a bleeding disorder.
bleeding_disorders_travel_tips[1] Away We Go: Traveling with a bleeding disorder is possible thanks to the portability of factor concentrate. With proactive planning, people with a bleeding disorder can enjoy time away from home. This resource offers helpful hints on how to make your next trip a successful and enjoyable one.
Symposium_St Louis 2015 Inhibitor Track Presentations: The 2015 Inhibitor Track at the HFA Annual Educational Symposium included sessions on promising research and products for those with inhibitors, stress and anxiety, a Reduce Inhibitor Update, and a panel discussion on the past, present, and future of inhibitors.
bill-o-rights_no_gradient Self Advocacy Tool: Bleeders’ Bill of Rights: This tool, developed by HFA’s Care Access Working Group (CAWG) is about self-advocacy and empowerment. Use it to remind yourself of your rights, your choices, and your power.  
Transparency Toolkit Who’s Who Online: Online Transparency Tool: When navigating the online ecosystem of the bleeding disorders community, it can be confusing as to which organizations run what site. This tool shines a light on those pages and resources that may not have the most transparency in their name.
HH_navigate patience assistance Navigating Patient Assistance Programs: 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.
Symposium 2014 Thank you Banner 2014 Inhibitor Track Presentations: The 2014 Inhibitor Track at the HFA Annual Educational Symposium included sessions on what makes an inhibitor go into “overdrive,” physical therapy for those with inhibitors, immunology, and promising research and products for those with inhibitors.
 comprehensive_clinic_checklist Comprehensive Clinic Visit Checklist: As part of your or your child’s bleeding disorders management, it is customary to be seen by your healthcare provider or Hemophilia Treatment Center at least once a year for a comprehensive clinic visit. This fillable resources will help you organize your questions and concerns before, during and after your clinic visit.
tips_&_tricks[4] Tips & Tricks for Smoother Infusions: Finding a vein to administer clotting factor is not an easy task, especially for children. This resource,compiled by families in the bleeding disorders community and medical professionals, was created for parents of children with a bleeding disorder to provide helpful tips & tricks for smoother infusions.
helping_children[4]
HFA Families: I’ve Got This – Ages & Stages: One of the most important thing parents can do in the course of raising children is foster a sense of independence. This two page document addresses some common barriers to medical adherence, and offer methods and age appropriate tasks to increase adherence and help kids help themselves.

Assisting and Advocating for the Bleeding Disorders Community