Welcome to the Retina International Website.
Retina International is an umbrella group of patient led organizations in 43 countries who are supporting and funding research to find treatments and cures for age-related as well as genetic and inherited forms of retinal dystrophy. Our members also provide support and advice to those who are seeking information on specific retinal conditions, research and innovation at a national and regional level and in many cases counselling and rehabilitation services to those affected. You can learn more by visiting the members section of this site.
On Saturday September 29th we mark World Retina Day and are calling for national healthcare systems and insurers to recognise the importance of providing access to genetic testing services for those affected by Inherited Retinal Dystrophies – IRDs. IRDs are a family of conditions causing various forms of retinal dystrophy and in order for individuals and families to understand which gene affects them, a genetic test is required. A genetic test not only empowers patients to better understand how their condition is likely to progress and how it may affect future generations, it is also essential to allow patients become involved in research projects, to access appropriate clinical trials and the therapies that may emerge in the short to medium term.
Unfortunately for our community genetic testing for IRDs is not widely accessible. A 2017 survey of patient groups in the retina pace undertaken by Retina International, showed that the majority of individuals affected by IRDs are receiving genetic tests through research projects. This is not a sustainable situation and is only open to those with particular forms of IRD. In order to receive a complete diagnosis including access to a genetic counsellor who can provide the best information to individuals and families, a clinical genetic test should be provided.
As research develops, clinical trials increase and treatments emerge it has never been more important to have a genetic diagnosis of an IRD. 2018 was a landmark year for our community with the first treatment for a form of IRD – RP65 approved by the FDA and made available to patients in the United States. On September 21st2018, the Committee of Human Medicinal Products (CHMP) which is an important committee of the European Medicine Agency – the EMA - recommended this same therapy for approval in Europe. We now hope that in the coming months the therapy will be approved and available to European patients.
As a global organization Retina International is excited by developments in the United States and the potential of a treatment in Europe but is also aware that other regions have not yet begun the process of approval. We must, as a community, ensure that all regions benefit from the potential of sight saving therapies and with more likely to reach the market in the coming years, we believe genetic testing can go a long way towards preparing the community for this new era of hope.
The community has entered a new phase and is growing all of the time, Retina International is working hard to ensure that we can provide you details on the most up to date information through our website, our web based toolkits and social media platforms. We are currently planning to redevelop our site and we are developing a new communications strategy and would really appreciate your feedback on how we can make our site better for you so please do not hesitate to contact us at any time if you have any thoughts or suggestions on how we can improve our service to you.
We look forward to hearing from you and wish you a productive World Retina Day 2018!
Avril Daly –CEO, Retina International