I was pleased to attend a reception in Parliament hosted by HAE UK ahead of Rare Disease Day on 28 February.
Hereditary Angioedema (HAE) is a rare and potentially life-threatening genetic condition affecting around 1,500 people in the UK. While individual rare diseases may affect relatively small numbers, collectively rare diseases impact millions — around 1 in 17 people across the UK.
The most powerful part of the evening was hearing directly from patients and carers about the physical, emotional and practical challenges they face. Diagnosis and awareness remain significant barriers, and access to specialist treatment can make a profound difference to quality of life.
Events like this are an important reminder that patients must be at the centre of care and policy decisions. I am grateful to HAE UK and everyone who shared their experiences.
