Fighting Blindness CEO Kevin Whelan describes his organisation's experience of investing in clinical research.

1. www.FightingBlindness.ie
Our Vision
Our vision is to cure blindness;
to support those living with sight loss;
and to empower patients.

2. Who We Are
• Patient Led Organisation
• CURE: Research – invested €17 million 85 projects
• SUPPORT: Counselling and Therapy
• EMPOWER: Advocacy, Education, Information
• Representing patients
• 224,000 people with severe vision loss in Ireland
• 5,000 people with rare retinal conditions
www.FightingBlindness.ie

3. www.FightingBlindness.ie
Limited Sight……
…….Unlimited Vision

4. Patientsareinformedactorsinthesearchfor
treatmentsforunmetmedicalneedsandworkclosely
withpolicymakersathomeandabroad
Policyrelatingtohealthandmedicalresearchoften
hasitsoriginsatEUlevel–wemustbeactiveontwo
frontsEU/Nationally
Patientsareactiveindevelopingpolicyinvolvedin
areassuchasclinicaltraildevelopment,regulation
andaccesstoemergingtechnologies
PatientsarerepresentedatEMA,COMPCHMP
amongothergroups
Retinitis Pigmentosa
• Retinitis pigmentosa (RP) refers to a group of inherited
diseases that affect the photoreceptor (light sensing) cells
responsible for capturing images from the visual field.
• In Ireland, it is estimated that one in 4,000 people has RP,
which equates to approximately 1,500 individuals.
• RP is one of the most complicated genetic conditions of all,
and over 50 different genes have been identified to be
causative for various forms of RP.
• In 1983, families who were affected by RP came together to
support each other. At the time there
was little hope of treatments or cures.

5. www.FightingBlindness.ie
• But now we have hope.
• This announcement moves RhoNova™ further towards
clinical application and closer to the people who will
benefit from it.
• It’s is a prime example of the power of patient
involvement and how patient-led research can make a
real impact in the development of therapies.
• We are very proud in Fighting Blindness, and on behalf of
our members, to have played a part
in that.
Fighting Blindness – Genable – Spark

6. www.FightingBlindness.ie
……..Unlimited Vision
The team behind Genable – Prof Jane Farrar, Prof Peter
Humphries and Dr Paul Kenna – have spent over 30 years
investigating retinitis pigmentosa (RP) and Fighting Blindness,
its supporters and its members have been right beside them.