Global Patient Coalition Launch Multistakeholder Educational Toolkit to improve understanding of Age-related Macular Degeneration.
Dublin: November 27th, 2017. A global coalition of patients and representative groups concerned with vision health, aging and avoidable blindness today launched www.RETINA-AMD.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 Age-related Macular Degeneration (AMD).
AMD is a disabling eye condition that causes progressive loss of central vision. It affects a central area of the retina known as the macula, which is responsible for sharp central vision required for everyday activities such as reading, watching television, driving and facial recognition. Loss of central vision may have a major impact on a person’s independence and quality of life.
According to a recent meta-analysis published in the Lancet in 2017 (1) after uncorrected refractive error and cataract, AMD is the third most common cause of vision impairment and blindness in older adults worldwide. Global prevalence estimates indicate that AMD affects 9% of people aged between 45–85 years worldwide. Globally, it is estimated that approximately 196 million people will have AMD by 2020, and this number is expected to increase to 288 million by 2040 as a result of population ageing.
Speaking at the launch of the Toolkit the President of Retina International, Christina Fasser, stated ‘Although there has been a marked increase in awareness of AMD among the public at large over the past decade, the various stages and complexity of the disease are not well known. Early, intermediate and late stage AMD, including Geographic Atrophy (GA) and neovascular AMD are complex conditions with differing signs and symptoms. Early diagnosis is key to detect and treat the first signs of AMD successfully and to give all patients access to auxiliary aids and rehabilitation to improve their quality of life.
It is very important for patients and healthcare providers to understand how to spot the warning signs and ultimately ensure the best possible management for each form of the condition. Retina International in collaboration with a global coalition of representative groups worked together to bring to all stakeholders a comprehensive resource with the most up to date information on this complex and all too common condition.’
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 forms of AMD and the impact of much discussed scientific discovery on affected individuals and those who support them.
Marion Souveton, Senior ITNernational Policy Lead at F. Hoffmann-La Roche said at the launch ‘The impact of vision loss on people is often profound, creating anxiety for the future, preventing people from carrying out daily tasks, and adversely impacting their quality of life. Prevention of visual impairment requires increased awareness of the eye diseases, including AMD, to improve early detection and better inform patients about their condition and the options to address it.
Collaboration between all key stakeholders is needed (policy makers, regulators, physicians, payers, patients, academia and industry) to better understand the complexity of visual impairment, establish the true societal burden of these diseases, and, most importantly, to bring new and effective treatments rapidly to patients’
We hope that this important toolkit will help you in your understanding of AMD.
- Flaxman SR, Bourne RRA, Resnikoff S, Ackland P, Braithwaite T, Cicinelli MV, et al. Global causes of blindness and distance vision impairment 1990-2020: a systematic review and meta-analysis. Lancet Glob Health. 2017 Oct 10. pii: S2214-109X(17)30393-5.
About the GA Coalition
The GA Coalition is made up of patient organisations and representative groups concerned with vision health, aging and avoidable blindness. The group consists of representatives from the United States, Canada, Ireland, the United Kingdom, France, Germany, Switzerland, Hong Kong and Australia The Following organisations were also represented:
- Pro Retina Germany
- Retina France
- European Council of Optometry and Optics
- Prevent Blindness USA
- Canadian Institute for the Blind
- Retina Hong Kong
- Macular Disease Foundation Australia
- European Forum Against Blindness
- International Federation of Aging
- Retina International