Connect families
Build an inclusive worldwide network for sharing stories, encouragement, and practical support.
A family-led global community
Rare diagnosis.
Stronger together.
Connecting families affected by 3q13.31 microdeletion syndrome, raising awareness, and building a path toward greater understanding.
Find your communityLearn more
Understanding 3q13.31
Every story matters.
3q13.31 microdeletion syndrome is a rare genetic condition involving a missing segment of chromosome 3. Individual experiences, abilities, and support needs vary.
Families deserve understandable information, meaningful connections, and opportunities to share what they have learned.
No family should navigate a rare diagnosis alone.
Connection today. Knowledge for tomorrow.
Our mission
From family connection to scientific understanding
We aim to bring families, clinicians, educators, and researchers together to build a stronger community and improve understanding of 3q13.31 microdeletion syndrome.
Raise awareness
Share accessible information and help more people recognize the experiences of affected families.
Encourage research
Support responsible collaboration and opportunities for voluntary family participation.
You belong here
For families around the world
Newly diagnosed
Find a starting point for understanding the diagnosis and preparing questions for your care team.
Share experiences
Learn from family stories and celebrate each person's unique journey.
Build community
Help shape a welcoming network across countries and time zones.
Looking ahead
Family Registry
We are developing a voluntary family registry to learn more about the experiences, needs, and priorities of people affected by 3q13.31 microdeletion syndrome.
Before opening registration, we will provide clear details about consent, data use, and privacy protections.
Registry enrollment is not yet active on this website.
Why share family experiences?
Families hold valuable knowledge about diagnosis, development, care, education, and daily life. With appropriate privacy safeguards, voluntary contributions may help inform future priorities and collaborations.
Get involved
Small connections can create meaningful change.
Families, educators, clinicians, and researchers all have something important to contribute. Contact and community enrollment links will be added when confirmed.