Rare Disease Day 2016

This year the day’s central theme was to recognise the crucial role that patient voice plays in creating change and improving the lives of patients, their families and carers.


  1. We began our celebrations on 23rd March with our parliamentary reception in Wales

  2. Dr Andrea Edwards (AE): Clinical Director, All Wales Medical Genetics Service
  3. Ceri Hughes (CH): Director of Same but Different CIC and parent of Isaac, affected by the ultra-rare condition Moebius Syndrome
  4. In the run up to Rare Disease Day we raised awareness both online and at events across the country

  5. We held Twitter takeovers with policy makers and experts in rare disease

  6. On the 29th February our Chair, Alastair Kent OBE attended the Northern Ireland Rare Disease Partnership (NIRDP) parliamentary reception