12 April 2019

Do you think IRDs need more treatments & services?

What are the experiences of parents & guardians of children affected by #IRD?

We want to improve supports for your children. To ensure the right changes are made, we need real-life info from parents/guardians.

If you are living in the UK or Ireland, please email orla.galvin@retina-international.org to contribute your experience #IRD #PPI

If your child is affected by any of the IRDs listed below, please contact us to share your experience and help inform policy of its true impact on lives:

Usher syndrome
Stargardt disease
X-linked retinoschisis
Cone dystrophy
Cone-rod dystrophy
Best Disease


‘IRD COUNTS’ is gathering accurate data on the impact of IRDs on patients’ lives, to show the need for more research, treatment & services.


‘IRD COUNTS’ is the Inherited Retinal Dystrophies Consortium Operating for the Underrepresented for Novel Therapies and Services.


Please email orla.galvin@retina-international.org to contribute your experiences.


Many thanks for your participation and support.


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