Get cozy on the couch to listen to NHF’s new children’s book for kids with rare bleeding disorders, Super Seven! You’ll meet Tanner, a basketball-obsessed kid who has big dreams, a big game ahead of him – and a rambunctious little sister. We’ll play an interactive game with Super Bowl champion, philanthropist, and entrepreneur Josh Gordy, and then settle down to listen to NHF’s president and CEO, Dr. Len Valentino, read the first chapter of Super Seven. If you have a rare bleeding disorder in your family, or just want to join the fun, register today!
Most bleeding disorders are rare, but some are more rare than others. When a bleeding disorder is very rare, that means that only a very few people have it. Sometimes, a bleeding disorder can be so rare that only one in a million people have it! NHF created this book for boys and girls with very rare bleeding disorders. There are many very rare bleeding disorders, also called “rare factor deficiencies.” Factor I (1), II (2), V (5), VII (7), X (10) and XIII (13) deficiencies are all rare bleeding disorders. There are also other rare bleeding disorders, like Bernard-Soulier syndrome, Glanzmann’s thrombasthenia, or platelet storage pool disease. Each of these bleeding disorders affects a person differently. Some may have to take medication, like Tanner does in the story. Some don’t. Some may have nosebleeds, like Tanner does. And some people may have very few symptoms at all. But everyone who has a rare bleeding disorder is important. And everyone who has any type of bleeding disorder, whether it’s a very rare bleeding disorder, or less rare one like hemophilia or von Willebrand disease can get to know Tanner’s friends and family. You may find that you all have a lot in common!
Super Seven was written by the National Hemophilia Foundation and is appropriate for kids ages 8-12. We invite all kids, parents, caregivers, chapter staff, and providers to join us for this family-friendly event!
What to Wear: Your favorite pair of pajamas!
When: Rare Disease Day - Sunday, February 28, 2021
7:30 pm EST (6:30pm CST, 4:30pm PST, 2:30pm HST)