Community & Connection
No family should face ReNU2 alone
Living with a rare disorder can feel isolating—especially when the people around you have never heard of your child’s diagnosis.
The ReNU2 community brings together families from around the world who understand many of the questions, uncertainties, challenges, and joys that can come with caring for someone with an RNU2-2-related disorder.
Every family’s experience is different, but there is comfort in connecting with people who do not need every part of your experience explained.
Whether your family is newly diagnosed, has been searching for answers for years, or simply wants to know that someone else understands, you belong here.
Choose how you'd like to connect
Register Your Family
For parents and caregivers of someone with a confirmed RNU2-2 diagnosis. Registering adds your family to our community map and keeps you up to date with news and research.
Stay in Touch
For relatives, friends, clinicians, researchers, supporters, and families who suspect ReNU2 or are waiting for test results.
Join the ReNU2 Family Connect Group
A private, moderated Facebook group where parents and caregivers of people with a confirmed RNU2-2 diagnosis share experiences, ask questions and celebrate progress.
Find Families Around the World
ReNU2 families are finding one another across countries, languages, and cultures.
Our community map shows the growing global reach of ReNU2 and reminds families that they are part of something larger. It also helps us understand where translated information, professional education, and family support are most needed.
Family locations are displayed only with permission and do not include precise home addresses.
Connect in the Way That Feels Right for You
There is no single right way to participate.
You may want to introduce yourself immediately, ask questions, and connect with other families. You may prefer to read quietly for a while. You may choose to register for updates without joining social media.
All of those choices are welcome.
Families can connect through:
Our private parent and caregiver group
ReNU2 Foundation email updates
Virtual conversations and family gatherings
Facebook and Instagram
Community events and conferences
Research and advocacy opportunities
Direct contact with ReNU2 Foundation
You are never required to share more than feels comfortable.
A Global Community
ReNU2 is a global community. Our families speak different languages and navigate very different medical, educational, and support systems.
We are working to make information and opportunities accessible to more families through translated materials, regional connections, and country-specific resources.
If you can help with translation or would like to connect families in your region, we would be glad to hear from you.
Every Family Strengthens the Community
When families come together, they do more than reduce isolation. They help identify shared needs, guide meaningful research questions, increase awareness, and show clinicians, researchers, and potential partners that there is a community ready to collaborate.
Every family found strengthens our understanding.
Every experience shared helps us learn.
Every child and adult with ReNU2 deserves to be seen, supported, and counted.
Connecting Families. Advancing Research.
We Are Glad You Found Us
If you are unsure where to begin, have questions about joining the community, or simply need to speak with someone who understands, please reach out.
You do not need to have the right words or know exactly what you need.
We are here, and we are glad you found us.
