Retina International is delighted to launch an international survey on access to genetic testing and counselling services for those living with Inherited Retinal Degenerations (IRDs). The survey will remain open until mid August.
Please click on the language you would like to complete the survey in to access the survey:
RI has been working together with patients and families affected by Inherited Retinal Degenerations (IRDs) from across the world to design a survey to learn about how people all over the world living with IRDs, and their families, access genetic testing and counselling services.
The results of this survey will help to describe the best standard of care for people looking to obtain genetic testing and counselling for their IRD, and will identify where support is needed to deliver a good standard of genetic testing and counselling.
Therefore, the results will help individuals and organisations to advocate effectively for access to equitable, affordable, accessible and timely genetic testing for IRDs.
Participation in this survey will help clinicians, genetic specialists, researchers, eye care professionals, politicians and the general public to understand the information and support patients will need to navigate to the diagnosis, prognosis and care for their conditions and to facilitate further policy actions and research development in the Inherited Retinal Degeneration domain.