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.
Rare Bleeding Disorders education will cautiously return as a combination of in-person and virtual opportunities!
Our first in-person event will be hosted from August 25-28, 2022, in Houston, TX as part of the Bleeding Disorders Conference. Individuals with ultra-rare factor deficiencies and platelet disorders as well as members of their support network are invited to attend.
The Bleeding Disorders Conference enables communities to come together, network, learn and exchange information. This year the Rare Bleeding Disorders Conference will be integrated as its own individual track with multiple days of high quality and engaging educational sessions, ranging from the basics of Rare Bleeding Disorders to the newest research and treatment options. The Rare Bleeding Disorders track at BDC will also offer networking events and opportunities to help you connect with others, who are walking on a similar path. Furthermore, you will also be able to benefit from additional educational sessions, exhibitions, and networking opportunities beyond the Rare Bleeding Disorders track.
Virtually, you will have the opportunity to enjoy webinars geared directly towards Rare Bleeding Disorders related topics. These include our ever-growing on-demand content, including many of our amazing sessions from our 2021 Rare Bleeding Disorders Educational Series, as well as new content throughout 2022 (more information to follow).
For more information on how to attend the Bleeding Disorders Conference in person or virtually please visit: https://events.hemophilia.org/website/33832/
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.
If you would like the Ebook please click on the arrow below to download.
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.
Stay informed with the latest updates for the inheritable blood disorders community.