Unsure if this will help, but maybe.

Undiagnosed Diseases Network,
The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health. Its purpose is to bring together clinical and research experts from across the United States to solve the most challenging medical mysteries using advanced technologies.
Through this study, we hope to both help individual patients and families living with the burden of undiagnosed diseases, and contribute to the understanding of how the human body works.
https://undiagnosed.hms.harvard.edu/apply/

National Organization of Rare Diseases
They realize there are undiagnosed people and offer to help find a specialist.
https://rarediseases.org/understanding-rare-disease/undiagnosed-diseases/k