A HAE patient experience opportunity.
If you wish to participate in this one-time study, please send an e-mail to email@example.com 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.
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.
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
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HAE in the media
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News from the Pharmaceutical Companies
12th March 2012
Press Release about Firazyr
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