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Parenting with a Rare Disease Child Blog

Publication date: 16 Sep 2020

What is it like to be a parent of a rare disease child? Do you find yourself charting a world of unknowns? Your role is not limited to being a full-time parent. You are an advocate who is not only studying your child’s rare disease, but also contacting dozens geneticists or researchers to learn more.

The responsibility of caring for a child with a rare disease is much larger than the outside eye understands. When your child’s condition is rare, there may be no established community that understands you.

Rare Genomics Institute (RG) wants to help rare disease parents feel understood. Please fill out our short 3 minute form to tell us about the challenges and rewards of being a rare disease parent.

Access the form here:

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