In 2020 NHF began an exciting collaboration with a number of blood disorder groups who receive funding from the Centers of Disease Control and Prevention. The focal point of this collaboration is a series of public health-minded educational sessions designed to inform and engage the community about the ongoing programming and initiatives of the respective groups.
These events represent a great opportunity to learn about the unique and formidable challenges associated with rare conditions such as sickle cell disease, thalassemia, hereditary hemorrhagic telangiectasia (HHT), and blood disorders affecting females. There are several common themes running through these programs including the significant health disparities evident in many these underserved patient populations.
The 2021 Public Health for Blood Disorders series, which was first broadcast virtually during NHF’s Annual Bleeding Disorders Conference (BDC) last summer, is now available online and at no cost. Access the hyperlinked descriptions below to learn more and access the videos today!
Public Health: Women’s Health Issues delves into key topics including maternal mortality and blood disorders, the Healthy People 2020 initiative, females with von Willebrand disease, the Women in Research Engaged While Distancing (WIRED) program, and the use of Community Voices in Research (CVR) to promote self-advocacy and empowerment for women.
Public Health: Health Equity explores several critical issues such as understanding and addressing sickle cell disease healthcare disparities, health equity issues impacting optimal care in thalassemia, the burden of healthcare in HHT populations, and effect of the COVID-19 pandemic on the prevalence of excessive blood clots and the health implications for individuals in underserved areas.
Public Health: Aging covers multiple age-related topics including the mental and emotional health challenges encountered by older thalassemia patients, the new international guidelines for the diagnosis and management of HHT, emerging challenges experienced by aging individuals with bleeding disorders, plus the basics of Medicare and skilled nursing facilities.
NHF hopes you find this content to be both informative and enlightening.