Hi I am the mother of a 8 year old girl. She was born with cone rod dystrophy. She uses magnification, wears a hat at all times, uses iPad. She is severely sensitive to light. Any help or suggestions would be appreciated.
Hello together, who of you has already made a genetic test and which gene was discovered as defective? In my family it was a combination of two genes CDHR1 (previously known as PCDH21) and RGR
2 people with Cone-rod Dystrophies have taken the SF36 survey. Mean of Cone-rod Dystrophies is 1965 points (55 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey