A Very Special Patient
A CSL Plasma employee in Alabama knows what it’s like to be on the other side. When her son was a baby, he needed plasma-base…
Be a Mama Bear and Other Advice for Moms
Patient advocates wish a Happy Mother’s Day to the rare disease community.
What to Tell the Kids About COVID-19?
A walk to kindergarten with a group of 5-year-olds gave a CSL Behring scientist an idea for a timely children’s book.
Raising a Rare Girl
A mother’s memoir tells a story – both painful and joyful – about raising a daughter with a rare condition.
Watch Online: Swimming With the Dolphins
Find out how animal therapy works and why children who have Hemophilia B went for a swim with these friendly mammals in the F…
HAE and Kids
Hereditary angioedema, a challenging rare disease to manage, causes serious swelling episodes. Children can have them, too.
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.