Be Part of What Comes Next

NXG is an ultra-rare disease, and one of the greatest barriers to research is simply finding and connecting patients.

NXG Alliance is building a global community of patients and caregivers to better understand the experiences of those living with NXG and to help advance future research efforts.

By sharing information about your diagnosis, treatment experience, and interest in future studies, you can help identify patterns across the NXG community and strengthen advocacy and research initiatives.

The information you provide will help us better understand the NXG community and support future research efforts. If you indicate that you are interested in research opportunities, NXG Alliance may contact you with information about future studies. Participation is always voluntary.

If you or a loved one has been diagnosed with NXG, we invite you to join us.