| 20 September 2016

Welcome from our CEO

Thank you for visiting the Retina International Website 

Retina International and its members enter 2018 with a renewed sense of hope for people living with Inherited Retinal Dystrophies as a gene therapy to treat RPE65 a form of Inherited Retinal Dystrophy (IRD) has been approved by the Food and Drug Administration (FDA) in the United States.

The approval of this one time gene therapy for RPE65 demonstrates that IRDs are now an actionable conditions. The emergence of this treatment highlights the critical importance of genetic testing services, as in order to access therapies or even be part of a clinical trial a person must know the gene affecting them and their family. Access to genetic testing and reimbursement of that service differs from country to country and even within countries and so Retina International recommends that you contact your national organisation for local information. 

For more background on the improtance of genetic testing you can visit our toolkit on this site http://www.retina-international.org/toolkit-redaler

Retina International is also very concerned with ensuring that there is better awareness and understanding of the various stages of Age-related Macular Degeneration, AMD. You can log onto the AMD Toolkit www.Retina-AMD.org we hope that this important toolkit will help improve understanding of AMD.

As an international umbrella group of 43 patient led charities, foundations and voluntary groups funding research into retinal dystrophies, in the hope of developing treatments and cures we are looking forward to a productive 2018. The year will get off to a great start with the Retina International World Congress #RIWC2018 held at the University of Auckland in early February. At the event we will meet members from all over the world to discuss progress in national projects and learn from each other’s experiences of raising the profile of Retinal disease while supporting critical research into IRDs and Age-related conditions. We are most particularly looking forward to two days of scientific presentations from world leading researchers in the area of gene and cell therapy, artificial vision and rehabilitation. For more information log onto http://retina2018newzealand.com/

Established in 1978, our role is to provide a platform to exchange both lay and scientific ideas and foster collaboration among patient organisations, learned societies, researchers and clinicians in the retina field.

Retina International believes that all stakeholders must work together to achieve the collective goal of bringing a better quality of life to those affected by retinal degenerative conditions through education and the development of health policy. if you would like more informaiton on our organisation email us at info@retina-international.org 

We hope you enjoy your visit!

Avril Daly

CEO 

 

 

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