Patient and Caregiver Survey

Today, Retina International launches its second survey to understand the impact of COVID-19 on the retina community, this time considering specifically the perspective of people living with retinal dystrophies, and their caregivers. Through this survey, RI aims to establish a comprehensive understanding of the unique challenges many people living with visual impairments and blindness and their caregivers face as a direct result of this pandemic and how it has affected their ability to access essential and appropriate care, counsel and treatment for their retinal condition.

According to preliminary results published from the EURORDIS (Rare Diseases Europe) Rare Diseases Barometer Survey, 9 in 10 people have experienced a disruption in access to care due to COVID-191. Of particular interest and concern to Retina International and the retina community at large is that a reported 80% of Rare Eye Disease patients have had rehabilitation therapies cancelled or postponed as a direct consequence of the pandemic1. This can result in many people, particularly those who have also had treatment appointments postponed, to become anxious at the prospect of managing their vision loss alone.

RI recognises the importance of having patient and caregiver input and representation to influence and guide global health decisions which will address these concerns and adequately prepare the retina community for similarly disruptive global events in the future. For this reason, RI is calling on all people living with a retinal dystrophy or caring for someone with a retinal dystrophy to participate and share their experience of sight loss in these unprecedented times.

The findings from this survey will be used in conjunction with the outcomes of other surveys completed by RI’s membership, optometrists, ophthalmologists and genetic counsellors to advocate for the generation of policy measures, resources and supports which will enhance the provision of care, treatment and rehabilitation to benefit all people within the retina community on a local, national, international and supranational scale.

The survey, which is estimated to take 5 minutes to complete, is available via the link provided below.

We strongly urge you to participate in this survey as your responses will offer a clear insight into the challenges facing people living with retinal conditions, and will be invaluable in supporting RI’s cause.



EURORDIS website. Available at Accessed June 2020.

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