From invisability to patients advocasy

The story of Marit

In 2016 at the age of forty I found out about my rare disorder. I was born with cleft palate and eyeabnormalities with high risk of detatchments and blindness. Stickler syndrome are frequently left undiagnosed even those with serious complications. Today I’m happy to be a patients advocacy making awareness about my rare disorder. My hope is that earlyer diagnosis may lead to better quality of life. Thank you to the rare community worldwide- together we are stronger!

 

*Find others with Stickler syndrome on RareConnect, the online platform for people affected by rare diseases