Retina International's AMD Toolkit

Welcome to RETINA-AMD.ORG, an educational toolkit for a multi-stakeholder audience

Retina International, on behalf of the Action Retina Partnership, welcomes you to the AMD Online Toolkit. This educational resource was designed by patients for patients, their representatives and healthcare professionals concerned with vision health and avoidable blindness.

This initiative was conceived of and developed by a global partnership of patient representatives, including Retina International and supported by F. Hoffmann-La Roche and Novartis. It is designed to be a central information hub bringing users the most up to date information on the various forms of Age-related Macular Degeneration (AMD).

As patient representatives, we have witnessed an increase in awareness of AMD among the public at large over the past decade, however the different stages and complexity of the disease are not well understood.

Dry AMD, Wet AMD and Geographic Atrophy (GA) are conditions with differing signs and symptoms that require different interventions. It is very important for patients and healthcare providers to know how to spot the warning signs to ensure the best possible management for each person.

Users can read about the latest scientific developments in the field and learn what impact these developments may have on them.

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

Enjoy your visit.

About this site

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 age-related macular degeneration (AMD) and the advanced form of AMD, known as geographic atrophy (GA). The site has been developed to help individuals and their families with a diagnosis of AMD and/or GA to understand the disease and prepare themselves for the future.

It has also been developed to provide professionals with clear and concise information on AMD and GA, 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, Fighting Blindness (Ireland). This site has been supported by an unrestricted educational grant from F. Hoffmann-La Roche and Novartis.

RETINA ACTION – A Global Partnership for a Lifetime of Vision

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

The coalition 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 living with retinal conditions or at risk of developing these conditions are 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. This site describes these very complex conditions and aims 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 Council of the Blind  www.ccbnational.net

Blind & Low Vision New Zealand www.blindlowvision.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. Appropriate clinical trial processes, addressing the particular needs of those impacted by vision impairment and loss; and
4. 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 us at 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 retinal degenerative 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. For more information, please contact 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.