Hereditary Angioedema (HAE) UK were delighted to welcome Dame Rebecca Harris MP to a reception in Parliament yesterday 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 is affected by a rare disease, with diagnosis and awareness being the greatest barrier 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 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.

Rebecca met with Castle Point resident, Ann Harding at the event. Her daughter Sian is a HAE patient. Ann has been a member of HAE UK for many years and has great experience in getting treatment for her daughter and family members. Ann was happy to agree to join HAE UK as a Trustee to bring any skills she may have to assist the organisation.

Rebecca commented: "This was a really thought-provoking event which showed just how much still needs to be done to support Hereditary Angioedema and other rare disease patients. I learned a lot about living with such a condition and the impact it has on both physical and emotional well-being, not just for the patient, but the entire family.

"It was a pleasure to meet Ann to understand more about what is needed to secure treatment for rare diseases."

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.