In the US, a rare disease or disorder is defined as one that affects fewer than 200,000 people. This means hemophilia A and B, and the less-common factor deficiencies such as I, II, V, VII, X, XI, XII and XIII, are all rare disorders.
The National Bleeding Disorders Foundation offers several resources for families affected by rare bleeding disorders. These resources include educational events that provide meaningful community support; informative webinars to watch on-demand; downloadable/printable publications and brochures; live in-person workshops hosted by our chapter network; and referrals to websites that provide more detailed information for patients and families.
Living with an ultra-rare bleeding disorder presents unique questions and concerns for both individuals and their families. NBDF's Educational opportunities are designed to address these specific needs, offering quality education and valuable community support. Explore various avenues to enhance your understanding of inhibitors.
In-person opportunities provide an ideal setting for learning, and one such opportunity is the annual Bleeding Disorders Conference (BDC), hosted by NBDF. This year's BDC is scheduled from September 12th to 14th, 2024, in Atlanta, Georgia. Individuals with an ultra-rare bleeding disorder, actively dealing with their disorder or supporting someone who is, are encouraged to apply for the 2024 Connections for Learning Travel Grant.
Beyond ultra-rare education, the conference provides multiple days of high-quality, engaging educational sessions applicable to everyone in the bleeding disorders community. Additionally, ample networking opportunities and an exhibit hall filled with resources await, helping you connect with others sharing a similar journey.
Please note, this program is offered in English and Spanish.
NBDF has numerous publications, brochures and tools available here for download or if available print versions can be mailed to you by contacting handi@bleeding.org. These engaging resources span across different bleeding disorders and can be used for patients and families, or sharing with schools, workplaces and extended family members and friends.
If you would like the Ebook please click on the arrow below to download.
NBDF's online education provides free quality education on issues that matter to all members of the bleeding disorders community, from parents of young children to adults with rare bleeding disorders. These webinars and webcasts bring the experience of expert providers and your peers directly to you. Watch the most recent rare bleeding disorder webinars listed below, or browse the complete listing.
NBDF's Wednesday Webinars are a free education series open to providers and community members. Watch the recent webinars, browse the full listing, or register to attend upcoming Wednesday Webinars, and learn about the latest in research, breakthrough developments, and more.
Stay informed with the latest updates for the inheritable blood disorders community.
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