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Patient and Caregiver Survey


Retina International (RI) 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.

 

Link to the survey

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