GET INVOLVED
TODAY!
Help us on our mission to support others, raise awareness and share knowledge about this rare condition.
UPCOMING PROJECTS.
Our aim is to share information about this rare disease and offer support to those living with RP or struggling to get a diagnosis. We do this by:
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Helping others who may be without support or information about the condition
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Giving reassurance to others through our own experience
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Raising awareness of RP amongst the medical profession and the general public
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Providing a forum for exchanging knowledge and seeking further information
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Signposting to helpful resources
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Providing a listening ear when needed
Regional/Country Meet-ups
Spring/Summer 2025
If you are interested in setting up a group in your country or to find out if there are other patients in your area, please contact us.
Virtual Meet-ups
Spring/Summer 2025
We know what it's like to not be able to travel due to ill health, so we sometimes hold special on-line events and gatherings using Zoom.
New Website
January 2025
We're creating a new-look website to better help patients, family members, carers and health professionals.
MAKE AN IMPACT.
We work better together. If you can helps us in any way, we'd love to hear from you.