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.

 

BDC 2022 Travel Grant group photo

2023 Ultra-Rare Bleeding Disorders Education

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.

Ultra-Rare Bleeding Disorders education will return in person at BDC 2023!

The Bleeding Disorders Conference will take place from August 17th-19th, 2023, in National Harbor, Maryland. Individuals with ultra-rare factor deficiencies and platelet disorders as well as members of their support network are invited to apply for the 2023 Ultra-Rare Bleeding Disorder Education Travel Grant.

The Bleeding Disorders Conference enables communities to come together, network, learn and exchange information.

BDC 2023 will include a Ultra-Rare Bleeding Disorders Precon including topics ranging from the basics of Ultra-Rare Bleeding Disorders to the newest research and treatment options. We also offer networking opportunities beyond Rare Bleeding Disorders education and with multiple days of high quality and engaging educational sessions applicable to everyone in the bleeding disorders community. You will also find opportunities to help you connect with others who are walking on a similar path and explore the exhibit hall filled with resources for you and your loved ones.

For more information on eligibility and how to apply for the travel grant please visit:

Ultra-Rare Bleeding Disorders Travel Grants

Rare Bleeding Disorder Publications

NHF has numerous publications, brochures and tools available here for download or if available print versions can be mailed to you by contacting handi@hemophilia.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.

Rare Bleeding Disorders - ICON NHF download

Rare Bleeding Disorders Webinars

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.

All Webinars on Rare Bleeding Disorders

Wednesday Webinar Series

NHF'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.

All Wednesday Webinars

Genentech Sangamo Therapeutics Takeda BPL