On World Sight Day 2016, Retina International urges the global Retina community to advocate for equitable access to and reimbursement of essential genetic testing services for people living with Inherited Retinal Diseases (IRDs).
Following many decades of research, potential therapies that could improve the quality of life for those affected by IRDs are emerging, however understanding the genetic condition that affects each patient is essential if clinical trials are to be effective and treatment successful. Retina International is developing a toolkit to enable its members globally to be informed about the possibilities of a genetic diagnosis and encouraged to promote and advocate for accessibility to this essential service and to ensure re-imbursement is provided in their own regions and countries.
Retina International beleives those developing future healthcare pollicy at the national level must be aware that that genetic therapies are becoming a reality and so must plan for their delivery as a matter of urgency,
Genetic testing can have a positive impact on individuals and families affected with IRDs in a number of ways. When properly performed, interpreted, and acted on, genetic tests can improve the accuracy of diagnosis and prognosis as well as genetic counselling. Without an accurate genetic diagnosis patients from childhood to adulthood risk further vision loss as they will not be in a position to access the appropriate trial or treatment option for them. Unnecessary loss of vision is unacceptable to our community.
For further information contact Avril Daly at firstname.lastname@example.org