Share Your Story

Add your family's experience to the SETD5 community.

You don't have to write a lot. Answer as many or as few prompts as you'd like. There are no wrong answers, just your experience in your own words. Submissions are reviewed before being shared.
About You
Country or region; helps us understand how global our community is
About the Person with SETD5 Syndrome
e.g. whole exome sequencing, gene panel, chromosomal microarray
Your Story
Whether it took years or happened quickly — share as much or as little as feels right
What do they love? What makes them laugh? What are they good at? We want readers to know them as a person.
About your child, about yourself, or about this journey — it doesn't have to be a big thing
Practical tips, reassurance, things you've learned — whatever you wish someone had told you
School, therapies, daily routines, what works — whatever feels right to share
Optional Contact
Only if you'd like us to follow up or let you know if your story is shared

Your submission is private until reviewed. We'll never share your contact information.

✉️

Thank you for the feedback!

Your story has been received. Submissions are reviewed before being shared on the site.

← Back to Family Toolkit