A HAE patient experience opportunity.

We have been contacted by a market research company acting on behalf of one of the companies involved in HAE research and treatment development. They would like volunteers for the following;
Living with HAE- “How to improve the situation of patients coping with HAE?
To answer this question we are looking for 8 people with HAE to be interviewed in a 90 minute Round Table discussion together with other HAE patients, and exchange experiences. Your valuable participation will contribute to improving the lives of patients in general.
Time and location
The workshop will take place in London, on Sunday 22nd March from 2:00 – 3:30pm. Two international experts will moderate the workshop. The location will be 10 minutes by subway from King’s Cross / St Pancreas. You will be reimbursed for your time as well as for your travel expenses.

If you wish to participate in this one-time study, please send an e-mail to laura.szutowicz@haeuk.org with a SHORT description of your HAE (when and how you were diagnosed, what type you are, how it affects your daily life for good or bad!) and she will pass your details on to the market researcher who will then select the participants.

I Am Number 17.

One of our members has taken part in a fantastic campaign for Rare Disease Day 2020. I am number 17 is a campaign to help the voices of those with rare diseases be heard, brought to you by Takeda, together with 13 rare disease patient groups from across the UK. The goal is to increase the understanding of what it is like to live with a rare disease and show that rare isn’t always that rare.
Helping spread the word are #IAmNumber17 changemakers, each with their unique experience to share. https://iamnumber17.geneticalliance.org.uk

Royal London is the first centre in the world to be running a clinical trial of a new oral medication for people with HAE.

Royal London immunology department are enrolling patients for a trial  of an oral drug for acute attacks of HAE. The hope is for this drug to control HAE attacks early enough to prevent a full blown swelling. If effective, this would be ideal for patients who are not keen on taking regular medications or using injections for acute treatment.

Male or female patients over 18 years of age, with HAE type 1 or 2 are eligible to be considered for recruitment unless their nearest immunology centre is also planning to run this trial. The medication is to be used as soon as the patient notices the beginning of an HAE attack.

Any patients with 2 or more attacks in 93 days are eligible for this trial. If you are on a prophylactic (preventative) medication (e.g. Danazole, Oxandrolone or Tranexamic acid, regular C1 esterase Inhibitor), you will be asked to stop this before the trial and restart after the trial is completed. The length of time needed for stopping prophylactic medication is varied for different medications.

You would have 4 visits to the clinical research facilities at the Royal London Hospital for the purposes of this trial. There will be a fee of £200 per visit for your time in addition to travel and accommodation if required.​ 

If you are interested to know more, please contact Dr Sorena Kiani on BHNT.Advice-Immunology-Barts@nhs.net.

HAE Dissertation

One of our members, Philippa Adams, completed a University dissertation on HAE, titled ‘The Lived Experience of Women Who Have Hereditary Angioedema’

You can read her dissertation here.

HAE UK newsletters 

HAE UK Newsletter issue 23

HAE UK Newsletter issue 22

HAE UK Newsletter issue 21

HAE UK Newsletter Issue 20

HAE UK Newsletter Issue 19

HAE UK Newsletter Issue 18

HAE UK Newsletter Issue 17

HAE UK Newsletter Issue 16

HAE UK Newsletter Issue 15

HAE UK Newsletter Issue 14

HAE UK Newsletter Issue 13

HAE UK Newsletter Issue 12

HAE UK Newsletter Issue 11

HAE UK Newsletter Issue 10

HAE UK Newsletter Issue 9

HAE UK Newsletter Issue 8

HAE UK Newsletter Issue 7

HAE UK Newsletter Issue 6

HAE UK Newsletter Issue 5

HAE UK Newsletter Issue 4

HAE UK Newsletter Issue 3

HAE UK Newsletter Issue 2

HAE International newsletters

HAE International newsletters

HAE in the media

29th February 2016 was Rare Disease Day. Click here to see the Rare Disease Day supplement from the Independent newspaper

Daily Mail online news article, May 2014 (Isabel Richards)

Tameside Reporter newspaper article, May 2013 (Jen Harrison)

Dublin People newspaper article, May 2013 (Bettina Carty)

Article from the Nursing Standard, May 2013

South Wales Argus website article, April 2013 (Andy Long)

28th February was Rare Disease Day 2013. To see the Rare Disease Day supplement from the Independent newspapersee here.

BBC news website article, May 2012 (Rachel Annals)

Real People magazine article, July 2012 (Kathryn Lowe)

News from the Pharmaceutical Companies

19th February 2015
OPuS-2 Clinical trial research study
OPuS-2 Clinical trial research study additional centres
OPuS-2 Clinical trial research study additional centres July 2015 

27th May 2014
BioCryst Announces Positive Results From OPuS-1, a Phase 2 Trial of BCX4161 for the Prophylactic Treatment of Hereditary Angioedema

12th March 2012
Press Release about Firazyr

Events

The next HAE UK Patient Day is to be held in November 2020. More details about this popular event will be available on the events page.

HAE Day is on 16th May each year. Visit the HAE Awareness Day website to find out more and to see how you can help spread awareness of HAE.

The HAE Global Conference is held every two years. The next conference is to be held in Frankfurt in May 2020. Find out more by visiting the HAEi website