A Progress Report for Newborn Screening
Testing babies at birth helps spot rare diseases in time to help.
Virtual School: 3 Tips from a Life Coach
With many kids and parents home together, get advice for making it work.
COVID-19 and School
Right now, there are more questions than answers. Three experts offer advice on coping with unknowns.
Medi Teddy Update
Young rare disease patient – and nonprofit founder – continues to grow her mission to bring furry comfort to those who need i…
Parents, Kids and Rare Disease
When a rare disease is part of family life, expect a few extra challenges.
Can Kids Who Have Hemophilia Play Sports?
Let this video – taken at our annual event for kids with bleeding disorders – answer the question.
Watch Babies Make the News
NBC Nightly News spotlights Angela Forker’s fantastical photography featuring babies living with rare and serious diseases.
Tips From a Parenting Pro
Hear from a mom who raised three children who have bleeding disorders and then adopted a son who has hemophilia.
They Got Into the Game
More than 100 kids and teens participated in CSL Behring’s national sports competition for athletes who have bleeding disorde…
Sharing the Rare Disease Experience On Screen
CSL Behring-sponsored film festival puts rare diseases in the spotlight.
Video: Raising Kids and Managing a Rare Disease
Our patients share what it’s like to be a parent living with a rare condition.