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.
Register Your Family
Registering with ReNU2 Foundation helps ensure that your family is counted and connected.
Because RNU2-2-related disorders have only recently been recognized, finding families is an essential first step toward building support, improving awareness, and advancing research.
Registration helps us:
Understand where ReNU2 families live
Build a clearer picture of our global community
Connect families who would like to meet one another
Share relevant Foundation and research updates
Notify families about studies and other opportunities
Identify the needs and priorities of the community
Show clinicians and researchers that this is an organized and engaged community
Registering with the Foundation is not the same as enrolling in a research study. Families can decide separately whether they would like to learn about or participate in any research opportunity.
The registration process takes only a few minutes. Please complete the follow-up email so we can confirm your information and communication preferences.
Join Our Private Family Community
Our private, moderated Facebook group is a supportive space for parents and primary caregivers of people with a confirmed RNU2-2 diagnosis.
Families use the group to:
Introduce themselves and share their experiences
Ask questions and learn from one another
Discuss therapies, education, communication, and everyday life
Share experiences with seizures and other medical concerns
Celebrate progress, achievements, and joyful moments
Connect with families in their country or region
Learn about Foundation news, community events, and research opportunities
The group is intended for family-to-family connection. Information shared by other families reflects personal experience and should not replace guidance from your medical team.
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.
