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

2. 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
Registered charity no
Charity No

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

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

5. 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
Registered charity no
Charity No

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