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An IRD diagnosis doesn’t change

who you are.

Receiving a clinical diagnosis of an IRD such as retinitis pigmentosa, Usher syndrome, or Stargardt disease can be a complete whirlwind. Whether you think you might have an IRD or you're looking for information after a confirmed diagnosis, you are bound to have a lot of questions.

We hope to provide you with some answers and make the process of learning about IRD as easy as possible. But remember, an IRD doesn’t change who you are. Living with an IRD is about taking steps towards your goals and making adjustments along the way.

About IRD

An introduction to what IRDs are, what causes them, and how they can develop.

Recognising IRD

How doctors diagnose IRD and the importance of genetic testing.

Research into IRD

Information about ongoing research into IRD and its treatment.

Support and resources

Documents to help you understand more about IRD and how to talk to your doctor.

Welcome to

I’m a person with suspected inherited visual impairment

I’m a friend or family member of someone with suspected inherited visual impairment

I’m a healthcare professional


Information on this site is for a global audience and will not include information related
to specific referral centres. This is intended for local countries to add.
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