Aniridia is a devastating ocular disease requiring intensive eye care, social and community support from birth and throughout an individual’s lifetime.

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WG6: Patient-driven research

WG6: Patient-driven research

Patient-driven research: associations providing input into new research questions and studies, aniridia syndrome, non-ocular complications, survey studies, obtaining patient samples for research.


  • To run a pilot survey on social challenges related to aniridia in Europe.
  • To assess the quality of life of patients with aniridia Europe wide, utilizing new technology for data collection: eye condition and QL, systemic associations and QL, medical treatment and QL, surgical treatment and QL.


  • Prioritized list of research questions with the greatest unmet patient need arising from patient association-Action forum Manuscript of survey-based patient study across Europe.
  • Create and develop EU ANIRIDIA data-base of: clinical presentation, challenges, medical and surgical treatments, genetic and microstructural testing.
  • Teaching the supporting family members/parents.

WG 6 Leader: Prof Christina GRUPCHEVA (

When we are looking for something we must be aware of the perspective… is looking for the right perspective!