Patient Empowerment

A key objective of Retina International’s work is to empower people living with retinal conditions with the knowledge and capacity necessary to become powerful advocators, fighting for their retinal condition to be recognised as a global health priority and treated as such.

Retina International understands the burdens that the 2.2 million people around the globe with visual impairments or blindness live with each and every day and operates to highlight the inequities which have resulted in 1 million of these cases, which were preventable, to progress¹.

Retina International fosters and supports collaborations between patients, clinicians, researchers, policy makers and industry in the development of educational resources and awareness campaigns to influence policy at a national and international level and empower individuals and families affected by retinal dystrophies. Educating the retina patient community to be informed actors in the delivery of their health and social care is a core objective of Retina International.

Each person living with a retinal dystrophy has a key role in guiding these education and awareness campaigns because patients are “experts by experience”. Each individual’s perspective of their disease is unique and important; patients live with the condition every day, learn to manage it themselves with support from healthcare professionals, and by necessity, learn to navigate the health system in order to get the best care.

For this reason, your input and perspective is invaluable to us so we can accurately serve you and advocate for what will make a real difference to the lives of many living with retinal dystrophies. We strongly encourage you to join us in developing and improving these resources for your country and the wider retina community by joining and engaging with your local patient member organisation.

References

1. World Health Organisation. Available at https://www.who.int/news-room/fact-sheets/detail/blindness-and-visual-impairment. Accessed April 2020.