Register your RNU4-2 family member on the

International Map

This map may be used to facilitate collaboration within our community in the following ways: 

DRIVE AWARENESS * BUILD COMMUNITY * ADVANCE RESEARCH

Locate clusters of patients & identify areas that may benefit from clinical specialists * Find convenient locations for holding events, conferences, or regional meetup groups * Track numbers of patients and variants globally to encourage research and treatment development 

If you opt into being contacted via the map, you maybe notified about: research, events, resources, scientific developments, specialists, RNUopathy centers, recruiting opportunities, caregiver connections, and other communications.

* Click here to add a family member‍

RNU4-2 families mapped to date in: Algeria, Argentina, Australia, Austria, Belgium, Brazil, Bulgaria, Canada, Chile, China, Colombia, Czech Republic, Denmark, Dominican Republic, England, France, Germany, Greece, Guernsey and Alderney, Hong Kong, Iceland, Ireland, Israel, Italy, Japan, Mexico, Netherlands, New Zealand, Northern Ireland, Norway, Palestine, Poland, Romania, Russia, Saudi Arabia, Scotland, South Africa, South Korea, Spain, Sweden, Switzerland, Turkey, Ukraine, United States, Wales.

Last updated 25 October 2026

The map does not populate automatically. Manual uploads are performed periodically. Thank you for your patience as you may not see each entry posted immediately upon submission.

Pins in the same city overlap - you may request that your city be updated with your zip code by emailing united@renusyndrome.org with your submission ID or the email that you used to register.

If you have not opted in initially but decide to opt-in later, you can always change your mind and contact us at united@renusyndrome.org. There is also a link in your map registration email that enables you to edit your responses! You can also contact us if you’re interested in starting a global hub in your country. Global hubs are independently operated from ReNU Syndrome United in the United States, and collaborate on a monthly basis.

ReNU Syndrome United thanks Maestra.ai for providing global translation services for live events and transcriptions.

  • While registering adds strength to our numbers, if you opt in for communications when you register, we may contact you about all these things and more - 

    • Events, such as upcoming conferences, meetups, centers of excellence activities, fundraisers, awareness initiatives, etc.

    • News that emerges about RNU4-2

    • New resources available

    • New scientific and research developments, recruiting opportunities for research

    • Specialists in the field who want to connect with you, RNUopathy centers 

    • Connections, we contact you if someone wants to connect (usually based on variant or proximity)

    If you have not opted in initially but decide to opt-in later, you can always change your mind and contact us at united@renusyndrome.org. There is also a link in your map registration email that enables you to edit your responses! 

  • No, opting in for communications is entirely voluntary

  • We’ve have many requests to connect with other map registrants. Usually people would like an introduction either because their ReNU family member has the same variant, or because they live nearby.

    If you submit a Connection Request, we will check to see if that family has opted in to communications, and if so, we will contact them on your behalf.

    Occasionally, a researcher may also request a connection request. We will never share your information with ANY requestor without explicit approval. We will not contact you about a connection request if you have not opted in.

  • Connection requests generally look like this. However, you may edit and customize as you see fit when you submit this request to accommodate the information that you are comfortable sharing, or to add additional context. For example, you are not required to include your child’s name, or your phone number, but some people do choose to share these details. PLEASE FEEL FREE TO COPY AND PASTE THIS TEMPLATE INTO YOUR CONNECTION REQUEST, and then update the details:

    💙 A ReNU family would like to connect with you

    Hello,

    You are receiving this message because you opted in to communications from ReNU Syndrome United.

    Our organization was recently contacted by [PARENT NAME], a ReNU parent who saw your pin on the RNU4-2 map. Their [SON / DAUGHTER / CHILD], [CHILD NAME], [HAS THE SAME VARIANT / LIVES NEARBY IN LOCATION X].

    If you are open to connecting, [PARENT NAME] has asked us to share their contact information with you:

    • Email: [EMAIL]

    • Phone: [PHONE]

    Please note that ReNU Syndrome United does not share any information that is not publicly displayed on the map, including names, email addresses, or phone numbers. If you would like to connect, please contact [PARENT NAME] directly. Your contact information will not be shared without your explicit permission.

    Thank you,

    ReNU Syndrome United