Being told you have an Inherited Retinal Dystrophy… and that there is no treatment Tina Houlihan Chief Executive, RP Fighting Blindness.

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Presentation transcript:

Being told you have an Inherited Retinal Dystrophy… and that there is no treatment Tina Houlihan Chief Executive, RP Fighting Blindness

Inherited Retinal Dystrophies Group of genetic conditions (including Retinitis Pigmentosa) that cause retinal degeneration Currently there is no treatment Impact on vision is ongoing and unpredictable Relatively rare - 1 in 3,000-4,000 people affected www.rpfightingblindness.org.uk Registered charity no. 1153851 www.rpfightingblindness.org.uk Charity No. 1153851

Point of diagnosis ‘ Go home and go blind’ Complex and emotional impact Denial The extended implications of genetic conditions www.rpfightingblindness.org.uk Registered charity no. 1153851 www.rpfightingblindness.org.uk Charity No. 1153851

Support Importance of good onward referrals ECLO support and awareness Offered referral to genetic management Avoiding the ‘google search’ We are here …. whenever needed www.rpfightingblindness.org.uk Registered charity no. 1153851 www.rpfightingblindness.org.uk Charity No. 1153851

The ‘Professional’ Project Comprehensive list of all relevant professionals (in one place) Getting accurate information to the right places at the right time Professional training sessions Raise awareness of RPFB helpline and services www.rpfightingblindness.org.uk Registered charity no. 1153851 www.rpfightingblindness.org.uk Charity No. 1153851

Thank you www.rpfightingblindness.org.uk Charity No. 1153851 www.rpfightingblindness.org.uk Registered charity no. 1153851 www.rpfightingblindness.org.uk Charity No. 1153851

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