The disparities in diagnosis and care of people with mild bleeding disorders (both female and male) in comparison to those with labels of moderate or severe disease is evident both in the literature and in the discrepant ways in which milds are cared for at Hemophilia Treatment Centers across the country.
In March 2022 and in response to community requests, HFA hosted a Mild Matters Webinar, addressing the needs of people with mild bleeding disorders.
In April 2022, HFA facilitated the first Mild Matters Rap Session at Symposium in Texas. People with mild bleeding disorders gathered and shared concerns about accessing diagnosis and treatment.
In November of 2022, HFA hosted its first Mild Matters Summit to bring together a diverse group of patient stakeholders that represented males with mild bleeding disorders, females with mild bleeding disorders and parents of children with mild bleeding disorders. This group met to discuss the successes and challenges faced by people with mild bleeding disorders.
In 2023 HFA plans to host a Mild Matters Forum for Health Care Professionals, The second Mild Matters Patient Summit, and continue conversations at major gatherings, such as Symposium.
We are connecting community members and health care providers to learn more about barriers to diagnosis and care, including:
We are a community-based, patient-centered organization and are committed to championing the needs of families living with debilitating bleeding disorders. We advocate for safe and effective therapies and quality, affordable health coverage. Ultimately, we seek a better quality of life for all persons with bleeding disorders.
We work in conjunction with other national and state organizations on behalf of families living with bleeding disorders. Our officers and staff maintain a highly visible presence on Capitol Hill and speak regularly before the Food and Drug Administration (FDA), Centers for Disease Control and Prevention (CDC), and other key agencies.
We are committed to community education and provide tools and resources for patients to find local and financial assistance for their care.
HFA is headquartered in Washington, D.C., and partners with over 50 state and local community-based affiliated organizations made up of men, women, children, moms, dads, siblings, grandparents and friends impacted by a bleeding disorder. Additionally, we work with healthcare providers, therapy providers, specialty pharmacies, donors, and insurers, who play a significant role in patients’ and caregivers’ lives.