JOHANNESB URG: Did you know that as from September 23 to 29 the world will be marking World Retina week to raise awareness of retinal dystrophies.
Retina International reports that retinal dystrophies affect more than 40 million people worldwide. The global cost of these debilitating disorders could be as high as $20-bil annually, underscoring the need for swift actions to raise awareness of prevention, diagnosis and treatment options.
In 2012 there was a call on patients and their friends and families to think about what they can do to hasten the pace of progress towards the development and worldwide availability of safe and effective treatments, by eye-care professionals, vision researchers and scientific and medical funding bodies.
“This is a crucial time for patients, clinicians and research sponsors as comprehensive diagnostic data and clinical trial data have the ability to alter the prognosis for millions of patients who are experiencing sight-loss attributable to retinal disorders”.
Adding that, “We know from more than 30 years as an international patient organization that the rate of progress towards comprehensive effective diagnosis programmes and widespread availability of treatments for retinal disorders is largely dependent on the awareness and understanding of those who can address the associated issues”.
It is advised by Retina International eye care specialists that we can all take steps to brighten the future and reduce needless sight loss. Patients can assist with defining the diseases by consulting with eye care professionals and providing crucial data for defining genotype and phenotype, assist with conducting clinical trials by becoming subjects or assisting with generating revenue streams to allow trials to proceed.
Friends and family are important in defining disease types, supporting patients through clinical trial processes. The medical profession and health authorities have a role in ensuring training and resources are optimised with respect to effective prevention, diagnosis and treatment programmes are executed. And we can all advocate, to all involved in any of the six phases mentioned here, for the significant social, economic and communal benefits that we know will result from widespread access to safe, effective treatments for retinal disorders.
