About NXG Alliance

NXG Alliance was founded in 2026 after a family member’s diagnosis revealed how much remains unknown about NXG and how urgently more research is needed.

When our family member received his NXG diagnosis in early 2026, there was almost nothing to find. No patient community. Just a handful of online posts and a series of medical papers most people could not interpret on their own. What exists in the research is largely driven by small groups of dedicated physicians working without the patient numbers needed to attract meaningful funding.

That matters because research follows patients. More patients identified and willing to participate means more approved funding, more studies, and ultimately better treatment options. A registry is the first step.

If you were recently diagnosed and found this site, that is exactly why we built it. And if you are willing to go further, joining the registry interest list is the most direct way to help every patient who comes after you.