Retina International's AMD Toolkit

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

On behalf of Retina International and the Geographic Atrophy Coalition, I would like to welcome 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 coalition of patient representatives led by Retina International and supported by F. Hoffmann-La Roche. 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 development may have on them.

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

Enjoy your visit.

Christina Fasser, President, Retina International

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.

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 info@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.