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 will be notified about news, events, research opportunities, meetups, and other communications.
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 location overlap - you may request that your pin be shifted slightly for visibility by emailing united@renusyndrome.org with your submission ID or the email you used to opt in to communications.
If you opt in for communications when you register, we may contact you about all these things and more -
Upcoming conferences, events, meetups
Information about RNU4-2 in the news
New resources available
New scientific and research developments, recruiting opportunities for research
Specialists in the field who want to connect with you, RNUopathy centers
Caregiver 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!
ReNU Syndrome United thanks Maestra.ai for providing global translation services for live events and transcriptions.
RNU4-2 families mapped to date in: Algeria, 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 9 September 2026
Please submit inquiries about starting a global community hub in your country or territory to united@renusyndrome.org