The inherited bleeding disorders (IBD) community has witnessed significant advances in recent years thanks to novel therapeutic advances and technologies and improved diagnostic proficiency.
Yet important gaps persistent, particularly for those with rare disorders and underserved populations, including women with IBD.
A new initiative led by the National Hemophilia Foundation (NHF) and shaped by the voices of the patient community is underway to address this gap.
Our goal: to design and implement a national research blueprint that outlines actionable strategies to address the most important needs within the community and opportunities to accelerate progress through coordinated collaboration.
People with bleeding disorders are often connected to and with various community members such as local and national foundations/associations, their home health company, nurses , pharmaceutical representatives, etc. While people are often encouraged to wear medic alert ID, they do not know anyone in the EMS system who may be caring for them in case of an emergency. Through this project, EMS providers will receive education regarding bleeding disorders and the treatment required in an emergency. This project will seek to connect the HTC's with the EMS systems locally and regionally to coordinate the education with the EMS professionals to provide care.