News & events
New clinical trial for HAE
A research study in patients with HAE will begin soon, testing whether an oral, once a day, investigational medicine can reduce the frequency of HAE attacks over a 4 week period. If you are interested in participating, see here for more information.
Shire is performing a safety and efficacy study with CINRYZE for prevention of Angioedema Attacks in children aged 6-11 with Hereditary Angioedema.
The main objective of the study is to verify the difference in efficacy of CINRYZE, when dosed:
· 500 Units every 3-4 days or
· 1000 Units every 3-4 days.
There is no placebo in this study, all patients that complete the study will have had 12 weeks treatment with 500 units and 12 weeks with 1000 units. The order of the dosing is assigned at random, parents and patients will not know the order but the study doctor will. There is no treatment interruption when the dose is switched.
The study doctor will have to review the history of the patient’s angioedema attacks, to confirm if a patient can participate.
The study is performed in the UK by Dr Stephen Hughes, at the Royal Manchester Children’s hospital.
If you are interested in this study, please contact Dr Stephen Hughes at:
Dr Stephen Hughes
Consultant Paediatric Immunologist
Royal Manchester Children’s Hospital
Oxford Road, Manchester, M13 9WL
Tel: 0161 701 0678
Fax: 0161 701 5421
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 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
News from the Pharmaceutical Companies
12th March 2012
Press Release about Firazyr
The next HAE UK Patient Day is to be held on 19th November at the Mercure Holland House Hotel and Spa, Bristol. You can register for the event here.
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 2018. Find out more by visiting the HAEi website