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Back to School

Find resources to help kids with rare diseases have a happy, successful year.


The to-do list is long when it’s time to send a child back to school. There are school supplies to buy, immunizations to get and sleep schedules to manage. For parents of children who have a rare or serious disease, it’s also an important time to connect with new schools, the school nurse, teachers and their child’s classmates. Here’s some advice for parents and guardians:


Going to School with Hemophilia: Shonda Joshua is a mom who knows how to run a meeting with school officials. Get her tips for making it a productive, collaborative relationship, especially when your child needs special care or accommodations.


School, Sports and Sleepovers: It might not be obvious your child has a primary immunodeficiency disease (PI), so it’s up to parents and kids to decide who needs to know. Hear from a mom who raised a now-college-age son who has PI.


Patient advocacy organizations also offer back-to-school resources – helpful if you need templates for letters and assistance with education plans:


Hemophilia and School: Developing an Individualized Healthcare Plan

The Child with a Bleeding Disorder: First Aid for School Personnel

Study Life from the U.S. Hereditary Angioedema Association


Groups, including the Alpha-1 Foundation, also recommend children’s books that can help explain an illness to other kids – or even provide a basic understanding for teachers and administrators. Find book suggestions about Alpha-1 in the foundations Alpha-1 Kids section.