Hereditary Angioedema (HAE) UK, with Dr Neil Hudson MP, hosted a reception in Parliament this week, raising awareness of rare diseases ahead of Rare Disease Day on 28th February.
Hereditary Angioedema (HAE) is a potentially life-threatening rare genetic condition affecting around 1500 people in the UK and one of over 7,000 rare diseases recognised in the UK. One in 17 people in the UK are affected by a rare disease, with diagnosis and awareness being the greatest barriers to patient care. HAE UK is doing its best to tackle that, as it cannot be expected for every GP or A&E department to have heard of, or let alone know how to treat, each and every one.
With more than 20 patients and carers present, the well-attended event highlighted the physical, emotional and practical impact that a rare disease such as HAE has on patients’ daily lives. Numerous Parliamentarians from across the political spectrum had the opportunity to meet patients and hear first-hand how rare diseases are treated by the NHS and the impact it has on people’s lives.
Dr Neil Hudson, MP for Epping Forest, said:
“It was a privilege to host the event and to meet with patients and people living with HAE, along with their families and clinicians. Their stories were both moving and inspiring. Rare conditions affect relatively small numbers individually, but collectively, rare diseases impact millions across the UK. It is vital that we continue to improve awareness and diagnosis times, together with access to specialist care and treatment.
“Events like these demonstrate the importance of collaboration between patients, clinicians, industry and policymakers. By working together, we can ensure that people living with rare diseases receive timely diagnosis, appropriate treatment and the support they deserve. Patients should always be right at the centre of their care.”
You can find out more about Hereditary Angioedema at www.haeuk.org or
by contacting Angela Metcalfe, CEO of HAE UK at [email protected], or 07975 611787.
