From Angela Metcalfe, HAE UK

This year HAE UK were delighted to mark Rare Disease Day on 28th February, with several events held at the Houses of Parliament in London. These events were supported by Jim Shannon MP, and included a meeting of clinicians and patients, with a panel discussion hearing about individuals’ journeys with diagnosis and treatment pathways – 2 very different stories from HAE UK Trustees Rose Joseph and Dana Shapiro.

Leading UK Immunologist Dr Sorena Kiani and Consultant Nurse Christine Symons were the experts on the panel, explaining how important a good relationship is between patient and doctor to optimise the best treatment.

Many Politicians and Members of the House of Lords attended to hear the concerns, issues, and successes discussed – it was a great way to raise awareness of Hereditary Angioedema, and we received lots of interest in learning more about the condition.