At HFA, we believe that each member of the bleeding disorders community is their own best advocate. That’s why we’ve developed a number of tools and resources to empower you to stand up for yourself in your daily life.
Below are just a few our or resources. More can be found by exploring our Resource Library.
|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.|
|Employment Issues Toolkit: 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 Leave Act (FMLA), the Americans with Disabilities Act (ADA), job training and disclosure issues.|
|HFA’s Blood Sisterhood Program: It is a common misconception, even among medical professionals, that women cannot have a bleeding disorder (and hemophilia in particular). HFA’s Blood Sisterhood has the resources to help women advocate on their behalf, to meet other women with bleeding disorders, and track their care using our custom-built app just for women.|
|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.|
|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.|
|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.|
|Emergency Information Card: This customizable card, developed by HFA’s Care Access Working Group (CAWG), is intended to be placed on a car seat/seat belt, in a vehicle’s visor, or in your wallet, and is meant to be a quick reference for emergency medical responders. It is encouraged for you to have this document laminated after customizing.
|Emergency Room, Hospital, & Clinic Visit Toolkit: Living with a bleeding disorder can often mean frequent visits to emergency rooms, hospitals, and in other clinical settings. Becoming a strong self-advocate and developing good communication skills with providers can lead to better health outcomes. This toolkit offers resources to help you be a better partner in you or your child’s healthcare.|