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Parents, Kids and Rare Disease

When a rare disease is part of family life, expect a few extra challenges.


Every day in February, we’re sharing content about rare diseases in anticipation of Rare Disease Day on the last day of the month. Are you a parent caring for a child with a rare disease or do you have a rare disease yourself? Thanks to the moms, dads and other experts who shared advice and insights about being a parent.

Raising Resilient Kids

Tips from a Parenting Pro

How to Tell Kids About a Rare Disease

The Power of Parents

When Dad Has a Bleeding Disorder

Caring for Kids While Caring for Yourself