Fiona McLaughlin

I never planned on knowing anything about the rare disease world, but then my mother started falling, having double vision and speech difficulties. There was a prolonged period of many doctors, many tests and an eventual diagnosis of something rare with no treatment, no cure and a baffling name. Progressive Supranuclear Palsy taught the family about delayed and misdiagnosis, speech therapists, orthoptists, movement disorders, PEG feeding, wheelchairs and even Botox. We discovered that although PSP is rare, our experience wasn’t. We learned the power of collective voices. I was a founding Director of NIRDP and served as Chair from 2016- 2018. My background is in education and training, and I was employed in the voluntary sector for 15 years before chronic illness took over. Apart from long term roles with NIRDP, I have volunteered with the PSP Association, NI Cancer Centre, Patient and Client Council and Royal College of GPs.