Please help us show how Prader-Willi syndrome affects people's lives in the UK
Researcher, Gina Skourti has been talking to families who have lost someone with Prader-Willi syndrome to see what lessons can be learned from their experiences. Gina and our trustee, Dr Anne Livesey, recently presented their findings at the Learning Together Conference.
You may have seen the recent ITV report where a whistle-blower working in a Local Authority as a SEN caseworker revealed how senior managers were deliberately delaying access for families for Special Educational Needs and Disabilities (SEND) services.
