From Executive Officer Rachel Annals, HAE UK
We have had a busy few months including arranging our next patient day; Saturday 20 May. Patients and their families as well as HAE professionals will join us to hear the latest news relevant to the UK, to meet with the team and other HAE friends.
The Rt Hon Sir Iain Duncan Smith MP and CEO Angela Metcalfe, HAE UK
We have also recently been working hard to raise awareness of HAE, not least by engaging with Members of the UK Parliament. In 2020 the UK Rare Disease Framework was published, setting out a coherent, national vision of how the UK will improve the lives of those living with rare diseases.
On Rare Disease Day 28 February 2023, the UK Government published its Rare Disease Action Plan on how the Framework is progressing. Angela Metcalfe, CEO of HAE UK, was delighted to meet the Rt Hon Sir Iain Duncan Smith MP to discuss how we are working to raise awareness of this rare disease, how we are ensuring equity of care across the country and devolved nations, and are putting together an action plan to educate and train emergency medicine practitioners about the condition.
In addition, the latest issue of “Revolution Magazine” was published, which was entirely focused on HAE. Many very interesting articles from patients and healthcare professionals were included, and we encourage you to have a read: https://bit.ly/RDD2023-HAE.
On 9 March 2023, Angela Metcalfe attended a Debate in Westminster Hall at the UK Parliament, which was led by Jim Shannon, Member of Parliament for Strangford in Northern Ireland. The 90-minute debate entitled “Patients with Rare Diseases” was attended by Liz Twist MP, Deidre Brock MP, Feryal Clark MP, and the Minister of State for Social Care, Helen Whately MP. It was excellent to have the opportunity for Jim Shannon to talk about HAE and other rare diseases and for the minister to then update and answer questions.
You can read the whole debate in the daily journal of Parliament “Hansard” at https://bit.ly/hansard2023.
On 20 May we held our first in-person patient day for 3 years, due to the COVID-19 pandemic, in central London. The event was well attended by patients and caregivers, and we had some fantastic presentation from some of our amazing HAE clinicians. We have received great feedback from attendees, especially highlighting how great it was to be back meeting their HAE “family” again. During our lunch break we took part in a beautiful sunny walk to celebrate HAE day on 16 May, around Russel Square. Everyone wore special HAE t-shirts to raise awareness and shoe togetherness. We are so thankful to everyone who joined us for the day and we very much look forward to our next event!
