A global coalition of patients and representative groups concerned with vision health, aging, and avoidable blindness has launched a central hub designed to bring the most up-to-date information on the various forms of Age-related Macular Degeneration (AMD) to patients, their representatives, health care providers, and policy makers. .
The Toolkit, available at www.RETINA-AMD.org, was developed by the global “GA Coalition” under Retina International and supported by an unrestricted educational grant from F. Hoffmann-La Roche AG. 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
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
Speaking at the launch of the Toolkit, Christina Fasser, President of Retina International, said, “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 detection and treatment at the first signs of AMD in order 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.”
As part of the Toolkit development, 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 International Health Policy Lead at F. Hoffmann-La Roche AG, 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 eye diseases, including AMD, to improve early detection and better inform patients about their condition and the options available to address it.
“Collaboration between all key stakeholders (policy makers, regulators, physicians, payers, patients, academia and industry) is needed 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.”
Retina International hopes that the Toolkit will help the understanding of all stakeholder in AMD.