Supporting someone living with a retinal condition
Find reliable information about retinal conditions, practical guidance for caring for someone with vision loss, support organisations and the latest research – all in one place.
Find a Retinal Condition
Age-Related & Acquired Retinal Conditions
These conditions usually develop later in life and may be associated with ageing, other health conditions, inflammation, injury or other factors. Vision changes can affect independence and everyday activities. Learning about the condition can help you understand the challenges your family member may experience and explore ways to support them.
Inherited Retinal Diseases (IRDs)
Inherited retinal diseases are a group of genetic conditions that affect the retina and can cause vision loss over time. They can affect people of all ages and may have implications for other family members. Understanding the diagnosis, inheritance patterns and genetic testing options can help families make informed decisions and access appropriate support.
Additional Vision-Related Conditions
Other conditions affecting the eye and visual system can also change vision and quality of life. Learning about these conditions can help you better understand your family member’s needs and the care or support they may require.
Find Research on Caregivers
Age-Related & Acquired Retinal Conditions
These conditions usually develop later in life and may be associated with ageing, other health conditions, inflammation, injury or other factors. Vision changes can affect independence and everyday activities. Learning about the condition can help you understand the challenges your family member may experience and explore ways to support them.
Inherited Retinal Diseases (IRDs)
Inherited retinal diseases are a group of genetic conditions that affect the retina and can cause vision loss over time. They can affect people of all ages and may have implications for other family members. Understanding the diagnosis, inheritance patterns and genetic testing options can help families make informed decisions and access appropriate support.
Additional Vision-Related Conditions
Other conditions affecting the eye and visual system can also change vision and quality of life. Learning about these conditions can help you better understand your family member’s needs and the care or support they may require.
Support at Every Stage
Supporting Someone with a Retinal Condition: A Guide for Carers and Families
Understanding the Diagnosis
Learn about the retinal condition, what to expect and how vision may change over time. Prepare questions for healthcare professionals, discuss concerns and seek reliable information to help you understand available treatments and support.
Practical and Emotional Support
Offer practical help with everyday activities while respecting the person’s independence, privacy and personal choices. Listen to their concerns, provide emotional support and involve them in decisions about their care.
Looking After Yourself
Supporting a family member can be demanding. Make time for your own wellbeing, recognise signs of stress or carer fatigue, and seek support from friends, family, healthcare professionals or carer support organisations when needed.
Family and Genetic Testing
Some retinal conditions are inherited and may have implications for other family members. Learn about inheritance patterns, genetic testing and genetic counselling to help your family understand the information and make informed decisions.
Planning for the Future
Explore services and tools that can support independence and quality of life, including vision rehabilitation, assistive technology, social services, financial support and care options. Planning ahead can help you understand what support may be available as needs change.
Find support near you
Reach out to Retina International’s member organisations to connect with your national or local patient organisation for information, guidance and support for you and your family.
Further support
Supporting Someone with a Retinal Condition?
You don’t have to navigate the journey alone. Connect with Retina International’s member organisations across more than 40 countries to find information, support and a community that understands.
Connect with 43 member organisations across 40+ countries.
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