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Families with genetic diagnoses of EB – OPEN

Share your experience of living with epidermolysis bullosa (EB) – are you an adult living with EB, or a parent of a child affected by EB?

Anna Ridgeway, a final-year MSc Genetic and Genomic Counselling student at Cardiff University, is inviting participants from the EB community in Ireland and the UK to take part in her research project.

Anna’s research aims to explore the lived experiences of individuals and families affected by EB, with a particular focus on understanding what it means to have a genetic diagnosis within the family.

 

Who can take part?

  • Adults (18+) Living with EB
  • Parents of children living with EB
  • Able to communicate in English

What’s involved?

A one-hour online interview where you’ll be invited to share your personal experiences of having a diagnosis of EB personally or in your family. Interviews will be audio recorded for research purposes.

Interested in taking part?

To learn more and register your interest, contact Anna Ridgeway directly at ridgewaya@cardiff.ac.uk. She’ll be happy to answer any questions.

Participation is open until March 2026.

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