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Information for healthcare professionals: Genetic testing and counselling in inherited retinal disease

Vanessa is the General Counsel at the Alan Turing Institute, the UK’s national data science and artificial intelligence research institute.

• Trustee
• Written

Cataracts occur fairly frequently and at a relatively early age within the Retina UK community of people with inherited retinal conditions. A question that comes up over and over again is whether or not to have cataract surgery.

• Podcast
• Audio

Autoimmune diseases are quite distinct from inherited retinal dystrophies.

The BBC covered a story on Monday 24 May about optogenetics partially restoring the sight of a man living with retinitis pigmentosa in France.

• News

The team have found the cause of disease in the first ever family tree drawn up at Moorfields Eye Hospital over 35 years ago, which had remained unsolved until now.

• News
• Retinitis pigmentosa

Ashley is currently the Vice President & Chief Financial Officer, International for Vertex Pharmaceuticals.

• Trustee
• Written

In 2014 we funded an exciting new collaborative project. The UK Inherited Retinal Dystrophy Consortium (UKIRDC) Project brought together the four largest research groups in the UK specialising in inherited retinal diseases (IRDs).

In 2023, the annual Isle of Wight walk in support of Retina UK will return. Starting at Ryde Pier, walkers will follow a five mile scenic walk with spectacular views.

• Walks and treks
• Isle of Wight

Bhavini was diagnosed with RP in 1997 aged 17. The consultant who confirmed her diagnosis told her that “there was no cure or treatment and she should prepare to go blind".

• Case study - community
• Written