About us


Millions of people all over the world are living with severe vision loss, a significant proportion of which is due to Retinal Dystrophies or Retinal Degenerations as they are also known. For individuals and families who have been diagnosed with a retinal dystrophy be it rare, genetic and inherited or age-related, access to relevant, detailed and clearly understandable information is essential. This site aims to provide timely, relevant and accurate information to patients and their families and professionals (Eye Care Professionals, Advocates, etc.) on Inherited Retinal Degenerations (IRDs). The site has been developed to help individuals and their families with a diagnosis of IRDs to understand the disease and prepare themselves for the future.


It has also been developed to provide professionals with clear and concise information on IRDs, in particular, to provide them with the relevant information to advocate for improved services for affected individuals, and funding of relevant research to help support development and reimbursement of innovative therapies. This site has benefited from input from a wide range of individuals and organisations that supported development and review of content, and website design and testing. Images and videos have come from a wide range of organisations, including the National Eye Institute at the National Institutes of Health and Fighting Blindness (Ireland). This site has been supported by an unrestricted educational grant from Novartis.

About Retina International


For 42 years, Retina International (RI) has been the voice of patient-led voluntary groups, charities and foundations world-wide who fund and support Retinal Research that is seeking a cure for Retinitis Pigmentosa (RP), Macular Degeneration, Ushers Syndrome & Allied Retinal Dystrophies.


RI has over 43 active members made up of Patient-led Voluntary Groups, Charities and Foundations from around the world, all with the common goal of finding cures and treatments for Retinal Dystrophies by supporting Research and Innovation.


A core objective of RI is to develop capacity building tools that will build a united and educated community that is equipped to advocate with confidence for


  • Better investment in research and the infrastructures that support it;
  • Access to genetic testing;
  • Appropriate clinical trial processes, addressing the particular needs of those impacted by vision impairment and loss; and
  • Global and equitable access to therapies for retinal dystrophies.

RI fosters and supports collaborations between patients, clinicians, researchers, policy makers and industry in the development of educational tools and awareness campaigns that will bring about a better quality of life for individuals and families affected by retinal dystrophies.