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 Hemophilia 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.
When you have an ultra-rare bleeding disorder, it can be difficult to find the kind of specialized support you need. You need to talk to experts who understand the nuances of your disorder, and a community that knows what you are going through. NHF offers an educational series that will enable you to learn more about managing the physical and emotional aspects of living with a rare bleeding disorder. Below is a list of upcoming and/or recently past rare bleeding disorder events.
NHF has numerous publications, brochures and tools available here for download or if available print versions can be mailed to you by contacting firstname.lastname@example.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.
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NHF'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.