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:聽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聽Child Life Council鈥檚 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 compiled by parents of children with a bleeding disorder.
bleeding_disorders_travel_tips[1] Away We Go:聽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.
bill-o-rights_no_gradient Self Advocacy Tool: Bleeders’ Bill of Rights:聽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:聽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.
Patient Assistance Portal Navigating Patient Assistance Programs:聽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鈥檚 budget. Many manufacturers of factor products have co-pay assistance programs that can provide a source of relief.
comprehensive_clinic_checklist Comprehensive Clinic Visit Checklist:聽As part of your or your child’s bleeding disorders management, it is customary to be seen by your healthcare provider or聽Hemophilia Treatment Center聽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:聽Finding a vein to administer clotting factor is not an easy task, especially for children. This聽resource, compiled by families in the bleeding disorders聽community and medical professionals, was created for parents of children with a bleeding disorder to provide helpful tips & tricks for smoother infusions.
HFA Families: I’ve Got This – Ages & Stages:聽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.
Science Update State of the Science on Inhibitors:

In this webinar, Drs. Pipe and Ragni will discuss the progress and challenges in the design and implementation of these research studies to prevent and eradicate inhibitors.

Learning Objectives:
1.List the potential stakeholders to help implement an inhibitor
research initiative.
2.Describe some of the challenges in designing inhibitor prevention and eradication trials in a rare population.
3. Explain how a longitudinal birth cohort could be used to study FVIII tolerance.
4. Describe the roles of an observational cohort and a biorepository in promoting inhibitor research.

Sign up for E-mails, Dateline Magazine, and other ways to stay connected.