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. Living Rare is a four-part series that will enable you to learn more about managing the physical and emotional aspects of living with a rare bleeding disorder.

We invite you to register for the second part of the series addressing the topic of mental health held on Saturday, June 5, 2021 starting at 3:00PM EST/2:00PM CST/1:00PM MST/12:00PM PST/10:00AM HST. The event is free and open to everyone from around the world.

 

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.

CSL Behring Catalyst Biosciences
Bio Products Laboratory Takeda