Retinitis Pigmentosa (RP)
A group of inherited retinal diseases that cause progressive degeneration of the light-sensitive cells of the retina, known as photoreceptors.
Understanding Retinitis Pigmentosa
Retinitis Pigmentosa (RP) is a group of inherited retinal diseases that cause progressive degeneration of the light-sensitive cells of the retina, known as photoreceptors.
The condition primarily affects rod cells, which are responsible for vision in low light and peripheral (side) vision, and may later affect cone cells, which support central vision, colour vision, and detail.
RP affects people differently. Some individuals experience gradual changes in vision over many years, while others experience more rapid progression. Although there is currently no cure for most forms of RP, advances in research are leading to new approaches for diagnosis, treatment, and support.
Retina International works with patients, researchers, clinicians, and organisations worldwide to advance understanding of RP and accelerate progress towards better outcomes for people living with inherited retinal diseases.
What is Retinitis Pigmentosa?
Retinitis Pigmentosa is a group of rare genetic retinal conditions characterised by the progressive loss of photoreceptor cells in the retina.
The retina converts light into signals that are sent to the brain, allowing us to see. In RP, changes in specific genes affect the normal function and survival of retinal cells, leading to gradual vision loss.
RP is one of the most common inherited retinal diseases and affects people worldwide. It can occur as an isolated retinal condition or as part of a syndrome where other parts of the body are also affected.
The pattern and progression of vision loss can vary significantly between individuals, even among people with the same diagnosis.
80+ genes
More than 80 genes have been associated with forms of Retinitis Pigmentosa, reflecting its significant genetic diversity.
3 main inheritance patterns
RP can be inherited through autosomal dominant, autosomal recessive, or X-linked patterns.
Rod cells first
RP primarily affects rod photoreceptors, often causing early difficulty seeing in low light and loss of peripheral vision, before cone cells may become affected.
How RP can affect vision
Difficulty seeing in low light
Many people with RP first notice difficulty adapting to darkness or seeing in dim environments.
Loss of peripheral vision
Progressive loss of side vision may create a “tunnel vision” effect.
Difficulty navigating environments
Reduced peripheral vision can affect mobility, especially in unfamiliar places or crowded environments.
Changes in central vision
In some forms of RP, central vision may become affected over time, impacting reading, recognising faces, and seeing fine detail.
Colour vision changes
Some people may experience reduced ability to distinguish colours.
Identifying RP
Eye examination
An ophthalmologist will examine the retina and assess changes associated with RP.
Visual field testing
This measures peripheral vision and helps monitor changes over time.
Retinal imaging
Technologies such as optical coherence tomography (OCT) and fundus photography allow clinicians to examine retinal structure.
Electroretinography (ERG)
ERG measures the electrical responses of retinal cells and can help assess retinal function.
Genetic testing
Genetic testing can identify the gene responsible for RP in many cases. A genetic diagnosis can support understanding of inheritance patterns, inform care decisions, and help determine eligibility for clinical trials.
Current approaches to managing RP
Approved treatments
Some specific genetic forms of inherited retinal disease have approved treatments, and ongoing research continues to expand treatment options.
Low vision support
Specialist services can provide tools, training, and strategies to help people adapt to changes in vision.
Assistive technologies
Technology can support independence through screen readers, magnification tools, navigation systems, and accessibility features.
Rehabilitation services
Orientation and mobility training, occupational therapy, and other services can help people maintain confidence and independence.
Supporting independence and quality of life
Living with RP can involve adapting to changing vision and navigating challenges in education, employment, mobility, and daily activities.
Many people living with RP develop strategies and use available support to continue participating fully in their communities.
Support may include:
- Connecting with patient organisations
- Accessing low vision services
- Using assistive technology
- Planning for changes in vision
- Participating in research opportunities
- Connecting with others with lived experience
The experiences of people living with RP are central to shaping research priorities, healthcare approaches, and advocacy efforts.
Advancing the future of RP treatment
Gene therapy
Gene therapy approaches aim to address the underlying genetic cause of disease by delivering functional copies of genes or modifying genetic changes.
Learn About Gene TherapyRetinal cell therapies
Researchers are investigating whether replacement or regeneration of retinal cells could restore visual function.
Learn About Retinal Cell TherapyRetinal prostheses and vision restoration technologies
Innovative technologies aim to provide visual information by stimulating remaining retinal pathways or communicating directly with the visual system.
Learn About Retinal prostheses and vision restoration technologiesNatural history studies and registries
Long-term studies help researchers understand how RP progresses and identify meaningful outcomes for clinical trials.
Learn About Natural History StudiesClinical trials
People living with RP may have opportunities to participate in research studies investigating new treatments and technologies.
Learn About Clinical TrialsInformation and community support
Take the Next Step
Retinitis Pigmentosa affects each person differently, but no one should have to navigate vision loss alone.
Through research, advocacy, and global collaboration, the retinal community is working towards a future where inherited retinal diseases are better understood, better treated, and where everyone affected has access to the support they need.
