Tagged with: PRS

  • Pierre Robin Sequence Study for Trent Region Families

    7 May 2019

    The Nottingham-based Trent Cleft Service are putting together a set of resources for families affected by Pierre Robin Sequence. Can you help them by completing a short online survey?

  • International Pierre Robin Sequence Conference

    31 May 2017

    Yin Jones is one of CLAPA's Board of Trustees, and a mother of 4 year old Hannah who was born with a cleft palate and Pierre Robin Sequence. Yin is a Parent Contact and was the Chair of the Great Ormond Street Hospital Branch. Here she writes about her experience of the second ever international Pierre Robin Sequence conference.

  • Two Sides – Indy’s Story

    10 May 2017

    It was difficult watching my partner deal with her feelings of guilt over not being able to feed our daughter, and although we had been advised all was normal, I felt continual concern over Eva-Rose’s inability to feed - something just wasn’t right to me.