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Mark your special day, whilst fundraising for people with inherited sight loss.

We are proud to work collaboratively with a number of corporate partners to enable our community to live fulfilled lives today as well as supporting the pharmaceutical industry in their mission to develop potential new treatments.

Caryn talks about her experience taking part in the 2021 Virtual London Marathon.

• News

Autoimmune diseases are quite distinct from inherited retinal dystrophies.

There are about 125 million rod and cone cells within the retina that act as the eye's light receptors.

Emily Kearney is mum to four boys, aged four to 13, two of whom are living with an inherited sight loss condition.

• Case study - community
• Written

Aged 20, James was diagnosed with retinitis pigmentosa at a routine eye appointment in September 2015 and registered partially sighted, just prior to buying his first car and taking his driving test.

• Case study - community
• Written

Whether you are looking for practical information or emotional support, online, by phone or face-to-face, we’re here to help.

The aim of the site is to increase the level of awareness and understanding of genetic testing and genetic counselling among people living with inherited retinal dystrophies, empowering them to make fully informed decisions about their lives, healthcare and family planning.

X-linked inheritance means that the faulty gene is located on the X chromosome, the larger of the two sex chromosomes.