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History

History

NHF devoted two years to the development of MyBDC, reaching out to multiple stakeholders in the bleeding disorders community, including affected individuals, chapter leaders, providers, researchers, payers, and others to ensure the true needs of the community were recognized and incorporated into the initiative. While there have been many research initiatives on the effects of a bleeding disorder on a person’s life, they have either been narrow in scope or duration, and/or relied on provider-reported data. MyBDC is the first longitudinal research initiative to center around the patient’s voice and will capture a 360-degree view of living with a bleeding disorder over many years. As the nation’s most trusted patient advocacy group for people with bleeding disorders, NHF is uniquely positioned to develop and sustain the MyBDC initiative over the long-term. MyBDC delivers on NHF’s mission “to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.”