We Need a Change
Let’s address the elephant in the room! Our treaters, our clinicians, are not following the same guidelines across the country in caring for our women and girls.
FAIR has identified this inequity as a priority action item. We need to advocate for equitable care for women with bleeding disorders. Our audience is the doctors, nurses, social workers and other clinicians that care for women.
If this were easy, it would already be done! We need your help to advocate.
Our ask for care is simple and strong:
1. We come together
2. We recognize and lift the work that is already done
3. We hold clinician’s accountable for their own recommendations and advisories
One of the most significant bleeding disorder organizations in the world, the National Bleeding Disorder Foundation (formally NHF), hosts the Medical and Scientific Advisory Council (MASAC). This group is made up of some of the most respected clinicians and leading authorities on bleeding disorders in the United States.
These leaders have already spent time and effort in creating recommendations. Specifically, in March of 2021, this group approved MASAC Document 264. This document is titled: MASAC Recommendations Regarding Diagnosis and Management of Inherited Bleeding Disorders in Girls and Women with Personal and Family History of Bleeding. MASAC Document 264 specifies the guidelines of care recommendations regarding diagnosis and management of inherited bleeding disorders in girls and women with personal and family history of bleeding. You can read the full MASAC 264 document by clicking on the button above. We have also provided a link to the Hemophilia Federation of America’s Bleeder’s Bill of Rights as a useful tool as women plan for their clinical appointments.
We seek to honor this and advocate for its accountability.