Anyone have any advice about CIP?(Congenital Insensitivity to Pain)

I am the caregiver of a person with CIP. As he gets older, the challenges he faces have become more concerning. Does anyone have any suggestions on support groups, doctors who are aware of rare diseases, or other info that might help him cope? He has done extremely well in the 62 years he has lived with CIP, but is becoming discouraged because of a lack of medical support. His GP, who was wonderful, and who worked diligently, to keep him healthy, has retired. Any help out there?