Retina International's DED Toolkit

Welcome to RETINA-DED.ORG, an educational toolkit for a multi-stakeholder audience related to Diabetes-related Eye Diseases.

The objective of this toolkit is to give you an overview about DEDs, beginning with descriptions of Type 1, Type 2 and Gestational Diabetes and how management of these conditions can impact on eye health. This tool kit provides information on eye care and support with diabetes, coping with diagnosis of a diabetes-related eye condition, the role of the optometrist and ophthalmologist in management of your eye health as a person with diabetes, the importance of frequent screening, and descriptions of conditions your eye as a patient with diabetes will be more susceptible to.

DEDs are a collection of eye conditions that people living with diabetes are vulnerable to including the most sight threatening Diabetes-related Retinopathy and Diabetes-related Macular Edema.  This tool kit also provides information on other conditions that people living with diabetes are much more vulnerable to such as Diabetes-related Glaucoma, Diabetes-related Cataract, Diabetes-related Keratopathy, Diabetes-related Dry Eye Syndrome, and Diabetes-related Uveitis.

Diabetes-related Retinopathy is the leading cause of blindness in the working population. Globally 145 million people have some form of Diabetes-related Retinopathy with 45 million of these affected by vision-threatening Diabetes-related Retinopathy. Sight loss due to Diabetes-related Retinopathy cannot be regained. Fortunately with appropriate diabetes management, screening and therapy the effects of diabetes on the eyes can be delayed and prevented. This toolkit provides detailed information on these points.

With increasing evidence that management of diabetes, implementation of screening programmes and timely diagnosis can reduce the severity of DEDs, coupled with the thousands of ongoing clinical trials continuously advancing therapies, it is important to spread awareness of the potential to maintain healthy diabetes-related eyes and preserve sight.

We hope that this toolkit is useful for you and look forward to your feedback and suggestions.

About this site

Over 400 million people around the world are living with Diabetes, of these 145 million have some form of Diabetes-related Retinopathy, and of these 45 million people are at risk of losing their sight due to Diabetes-related Retinopathy. This is preventable. For individuals and families who have been diagnosed with any form of Diabetes, 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 Diabetes-related Eye Diseases (DEDs). The site has been developed to help individuals and their families with understanding the importance of timely screening, diagnosis and intervention, the importance of managing diabetes in terms of glucose and blood pressure management for the prevention of DEDs, understanding the various eye conditions associated with diabetes and to prepare themselves for the future.

It has also been developed to provide professionals with clear and concise information on DEDs, in particular, to provide them with the relevant information to advocate for education regarding the impact of diabetes on eye health, the implementation of screening programmes, as well as 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 ICON plc and Hoffmann-La Roche. This site has been supported by an unrestricted educational grant from Novartis and Hoffmann-La Roche.

RETINA ACTION – A Global Partnership for a Lifetime of Vision

Retina Action is a partnership of vision and aging groups representing the voice of people affected by vision loss and the aging population. 

The partnership has worked together informally for many years and in 2017 decided to formalise and develop a work stream to assist in its objectives of improving awareness of conditions such as Age-related Eye Disease, AMD, Geographic Atrophy, GA and Diabetes-related Eye Disease, DED. In late 2017 they launched retina-amd.org, a toolkit designed to provide the most up to date scientific information and therapeutic developments in the area of AMD. This information was developed for the members of the patient bodies that make up the coalition to use not only in their local communications and advocacy work but also to ensure those affected or at risk of developing these conditions were up to date on the latest scientific advances, therapy development and rehabilitation services. 

In January 2019 Retina Action launched retina-ded.org, a toolkit that provides high quality information to those at risk and affected by Diabetes-related Retinopathy, Diabetes-related Macular Edema and other diabetes-related eye diseases, a group of very complex conditions, to equip advocates with the information they need to educate policy makers on the importance of screening for this degenerative retinal disease. 

Who We Are RETINA ACTION  

Retina International www.retina-international.org 

Prevent Blindness USA www.preventblindness.org

International Federation on Aging Australia  www.ifa-fiv.org

Retina France www.retina.fr

ProRetina Germany www.pro-retina.de

Canadian National Institute for the Blind  www.cnib.ca

New Zealand Blind Foundation www.blindfoundation.org.nz

European Council of Optometry and Optics www.ecoo.info

European Alliance for Personalised Medicine www.euapm.eu

About Retina International

For almost 40 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 30 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

  1. Better investment in research and the infrastructures that support it;
  2. Access to genetic testing;
  3. Implementation of screening for DED and AMD to improve diagnosis process and enable better access to care and rehabilitation services;
  4. Appropriate clinical trial processes, addressing the particular needs of those impacted by vision impairment and loss; and
  5. 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.

Contact Retina International

If you have any questions or comments about this toolkit, please contact orla.galvin@retina-international.org

If you wish to become involved with Retina International as an advocate for positive change, we want to hear from you. Working together we can go a long way towards coordinating the global voice of patients affected by diabetes-related eye diseases to be effective actors in their health care choices now and into the future.

Promoting the establishment and development of patient-led organisations in countries in which such societies do not already exist is integral to the growth of a well-informed patient community. RI is here to help emerging organisations set clear goals and to realise them. Please contact us at info@retina-international.org or our CEO Avril Daly at avril.daly@retina-international.org

Disclaimer

Retina International is not responsible for the content of any other website or online portal accessible from this website, nor does it endorse or in any respect warrant any third party products or services by virtue of any information, material or content referred to, included on, or linked from or to this website.

This site has been supported by an unrestricted educational grant from Novartis and Hoffmann-LA Roche