The bleeding disorders community is full of amazing advocates – people who work to make their voices heard on issues that affect the bleeding disorders community. People with bleeding disorders have advocated for safer treatments and the safety of the blood supply, against discrimination based on genetic conditions, and expanded health care access. You can be a part of this long legacy of advocacy by connecting with your chapter, sharing your story, and making your voice heard!
Tell Your Story
Your story matters. People with bleeding disorders, caregivers, and healthcare providers face real challenges every day—especially when it comes to accessing care and treatment. We have a place to share what you’re experiencing so we can better understand the barriers facing the bleeding disorders community and work toward solutions.
Connect With Your Chapter
Advocacy on the state level is very important, which is why NBDF works closely with their chapter network on developing and supporting strong state advocacy programs. If you’d like to get involved in state advocacy, find your local chapter to connect with them.
Contact Your Members of Congress
There are several issues that NBDF is encouraging people with hemophilia to contact their members of Congress to let them know how they will affect the bleeding disorders community.
Copay Accumulator Adjustor Programs
A copay accumulator adjustor program, or CAAP for short, is when pharmacy benefit manager or health plan accepts drug manufacturer copay assistance but does not count it towards a patient’s out-of-pocket maximum or deductible. There are two bills in Congress (one in the Senate, one in the House) that we need our community to tell their representatives to support. You can send an email to your member of Congress through NBDF grassroots advocacy tool.
Federal Bleeding Disorders Programs
Federal bleeding disorders programs at agencies within the US Department of Health and Human Services (HRSA, CDC, FDA, and NIH – see below) support care, research, and public health monitoring for bleeding disorders; oversee and ensure blood and product safety; and foster innovation and advances in treatment for people with bleeding disorders. You can send an email to your member of Congress in support of these programs through NBDF grassroots advocacy tool.