You are here: vision-research.eu » Vision Research » Vision in the European Focus » Launch of Retina International IRD Educational Toolkit

Launch of Retina International IRD Educational Toolkit

Retina International is delighted to announce the launch of our IRD Educational Toolkit to improve understanding of Inherited Retinal Diseases under the URL http://retina-ird.org

The toolkit is designed to be a central information hub bringing patients, their representatives, health care providers and policy makers the most up-to-date information on the various forms of Inherited Retinal Diseases.

More information in the offical press release by Retina International:

Inherited retinal diseases (IRDs; also called “inherited retinal dystrophies or degenerations”) are a diverse group of rare eye diseases, characterised by the progressive loss of function or death of light sensitive cells in the retina, resulting in associated vision loss or blindness. The underlying cause of all IRDs is the presence of a mutation(s) in genes involved in development and normal function of photoreceptors or other retinal cells.

It has been estimated that IRDs affect approximately 1 in every 3000 persons and can affect people of all ages – they are leading cause of vision loss in people of working age and a common cause of visual impairment in childhood.

Speaking at the launch of the Toolkit the President of Retina International, Christina Fasser, stated ‘Early diagnosis, and especially genetic diagnosis, is key to give all patients access to supports and treatments to improve their quality of life. Retina International recognises the need for reliable and up-to-date resources to inform, educate and empower patients. The recent approval of the first gene therapy for a specific type of IRD called LCA that is due to biallelic mutations in the RPE65 gene gives rise to a growing demand for more information for those affected, their families and professionals alike.’

A global survey was developed to better understand the needs of patients and the groups that represent them in order to provide the most useful information. It highlights the need for a clearer description of the various genetic forms of IRDs and the impact of much discussed scientific discovery on affected individuals and those who support them. We would like to thank our member organisations who contributed to this important survey.

IRDs are a complex collection of rare retinal degenerations. Given the breadth of information available about the various different types of IRDs, we will first launch Phase I with an initial focus on LCA and Usher Syndrome, and then follow with other conditions in Phases II and III. The Toolkit has been supported by an unrestricted educational grant from Novartis.

The aim of the IRD Toolkit is to serve our community and so we welcome any feedback, comments or suggestions that you think would help to improve it. It is for your benefit, please feel free to use any part of this Toolkit. Please contact sarah.mcloughlin[at]retina-international.org with your feedback.

We hope that this important toolkit will help you in your understanding of IRDs.

Retina International is a global umbrella of patient-led charitable organisations and foundations concerned with finding cures for retinal degenerative conditions including rare and age-related forms. The organisation has been successful in advocating for promoting research and development in the retinal space by fostering mutual support among those affected, their families and those who provide their care. RI is a powerful voice for the global retina community and today we launch www.retina-ird.org