Tell us about living with an IRD

March 22, 2019

Are you a parent or guardian of a child with an inherited retinal degeneration? We want to hear from you. Take part in a research survey and help us identify the real impact of these conditions on day to day lives.

What is an IRD?
Inherited retinal degenerations (IRDs), also called inherited retinopathies refer to a group of often rare conditions in which defects in genes lead to photoreceptor cell death and associated vision loss. These conditions include among others:

  • Retinitis pigmentosa (RP)
  • Leber congenital amaurosis (LCA) / early onset severe retinal dystrophy to LCA (LCA/EOSRD)
  • Usher syndrome
  • Stargardt disease
  • Choroideremia
  • X-linked retinoschisis
  • Achromatopsia
  • Cone dystrophy
  • Cone-rod dystrophy
  • Best disease

Why is this research important?
Fighting Blindness is a partner on a research project called IRD COUNTS, a consortium of patient organisations and industry partners working together to investigate the impact of living with an inherited retinal degeneration (IRD).

Being diagnosed with and living with an IRD can have a huge impact on an individual and their family and friends. However, given that these are often characterised as rare conditions, the data to support the social and cost burden of IRDs is lacking. IRD COUNTS aims to better understand the real impact of living with an inherited retinal degeneration.

This vital information will enable us to advocate for better services and supports, direct research and development, and raise awareness about the impact of these conditions on people’s day to day lives. This is particularly timely as potential interventions begin to move through clinical trial and progress towards regulatory approval. Outcomes and findings of this research study will be included in a report that will be issued later this year.

What is involved?
This research will be carried out through a survey, with adults living with an IRD or with the parent/guardian of a child living with an IRD. A child is recognised as anyone under the age of 18 years old.

The survey is open to anyone living in the Republic of Ireland or the UK. If you have one of these conditions, or are the parent/guardian of someone under 18 who has one of these conditions, and would like to register to participate in this survey, please send your name and email address to