Join Our Community

HNRNP-RNDD Family Registry

Patient-focused and family-led research is critical to understanding rare genetic disorders. Sign up for our registry to be counted in the number of HNRNP-RNDD families we know of and to be contacted for future research projects.

Join Registry

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Join the Registry

Registering takes about two minutes. This is the first step in a guided process. After you register, you will hear from our research team with clear next steps, and we will walk you through everything from there.

What we collect

Your name and the name of the affected individual
Email so we can follow up with next steps
Which HNRNP-RNDD affects your family
Location for our global community map
Your CRID, if you already have one

A CRID (Clinical Research ID) is a free identifier that protects your privacy across research studies. We will help you get one after you register.

Our research partner: Geneial

Research participation happens through Geneial, a secure platform built for sensitive health data. When you opt in to research, you will get an invitation from Geneial to finish setting up your account and sign the consent form. Geneial is our partner, and hearing from them means the process is working.

Name of the affected child or individual *

Your name (parent or caregiver) *

If you are registering for yourself, enter your own name again.

Email *

Which HNRNP-RNDD is your family affected by? *

City

Country

Your location helps us map our global community and connect nearby families.

CRID (optional)

If you already have a CRID, enter it here. If not, no problem. We will send you instructions after you register.

I would like to be contacted by a member of the HNRNP research team about participating in research, including the Natural History Study.

The information provided is kept confidential and used only for registry purposes and, if opted in, to contact you about research opportunities. We will never share your personal information without your consent.

Why Join the Registry?

Be Counted

Help us understand the true prevalence of HNRNP-related disorders. Every registration helps build a clearer picture of our community.

Advance Research

Be among the first to learn about new research studies, clinical trials, and opportunities to contribute to scientific understanding.

Connect with Others

Join a global network of families affected by HNRNP disorders. Share experiences and find support from those who understand.