Parenting with a Rare Disease Child

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What is it like to be a parent of a rare disease child? Your role is sometimes more than just a parent. You are an advocate who is not only studying your child’s rare disease, but also contacting dozens of doctors, geneticists, or researchers to learn more. Rare Genomics Institute (RG) wants to know more about what it means to be a rare disease parent. If you are one, please fill out our short 3 minute form and tell us what it means to you.

First Name, Last Name

Consent Statement *

I authorize the use of my descriptive text or commentary in connection with the Works.

I DO NOT authorize the use of my descriptive text or commentary.

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What is it like to be a parent of a child with a rare disease? How have you felt? What does your daily routine look like? *

How has COVID-19 affected your ability to effectively care for your child?

What rare disease is your child diagnosed with or are they undiagnosed? *

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