Individuals and families with rare bleeding disorders are supported by NHF’s specialized programs and resources. Our virtual Rare Bleeding Disorders Education Series is a four-part live online event that offers people with rare bleeding disorders the opportunity to learn more about their specific disorder, speak with expert hematologists, nurses and other healthcare providers who are knowledgeable about their disorder, and connect with a supportive community that understands their experience. All people with any rare bleeding disorder such as a rare factor deficiency or a platelet disorder are encouraged to attend.

The 2021 Rare Bleeding Disorders Education Series is offered at no cost to participants, and open to people from all around the world.

Overview of the Series:

  • Living Rare: Rare Bleeding Disorders Education Series will be held on Saturday, March 27, 2021 starting at 3:00PM EST / 2:00PM CST / 1:00PM MST / 12:00PM PST / 10:00 AM HST
  • Parts I, II, and IV will each feature three themed 45-minute sessions with scientific evidence-based information, plenary discussions, and conversations with participants.
  • Part III will coincide with NHF’s Bleeding Disorders Conference on August 26-28, 2021

 

REGISTER HERE

 

Super Seven: A Story for Rares


NHF’s book for kids ages 8-12 with a rare bleeding disorder, Super Seven, and its companion guide for parents/caregivers, is available free of charge. Super Seven is the story of Tanner, a 10-year old kid who is crazy about basketball and hopes to help his team win the championship. When an unexpected bleed interrupts these plans, Tanner has some tough decisions to make.

To request a physical copy of Super Seven and discussion guide, please select the appropriate button below:

 

Community Member Hemophilia Treatment Centers/Chapter

 

If you would like the Ebook please click on the arrow below to download.

*Please note if you are viewing on a PC you will need to download Calibre Reader.

Download Calibre Reader here.

 

NHF hopes to grow this program and other educational resources for families with rare bleeding disorders.

If you have any questions, please reach out to rares@hemophilia.org.

View sessions from our 2020 virtual Rare Bleeding Disorders Conference.

Advertisement
CSL Behring Catalyst Biosciences
Bio Products Laboratory Takeda