Understanding a Rare Diagnosis, Together

We help families understand this newly recognized disorder and connect with others for support. Clinicians can find concise medical information and emerging research updates.

You Are Not Alone

Our ReNU2 community map helps families see that others are out there too

When you complete the registration form, you help us build a clearer picture of our growing community while keeping personal information private.

We only plan to share general location details, such as city, state/country.

Every registration helps us build awareness, encourage connection, and better understand where support and future opportunities may be needed.

Affected Families - Join us online!

Connect with Us

Interested in learning more, connecting with our community, or asking a question?

Complete this form and we will follow up by email.