News & events
Branding Science study
Are you living with HAE?
Do you want to meet others and share your experience?
Do you think the healthcare industry could provide better support services for you?
We at Branding Science (an independent market research agency) are running a study and looking for volunteers to take part. We aim to explore and really understand the experience of living with HAE, and allow you to connect with others in a fun and interactive group discussion.
We will be talking about several important points in your journey such as diagnosis, impact, treatments and sources of support. We will be completing some creative exercises to illustrate these points (but nothing too strenuous!)
The discussion will take place in March/April (dates to be confirmed) and will be led by a moderator from Branding Science. It will take around 3 hours, including a lunch break with food and drink provided. You will be reimbursed for your time, and also any travel costs.
We have conducted this research in other EU countries (most recently Germany) with very positive results – participants brought the discussion to life and enjoyed spending time with others who share their experiences.
The results of this study will help our sponsoring pharmaceutical company to really understand HAE from the patient perspective, and potentially develop services that could provide support or meet any unmet needs.
If you’re interested in taking part, please contact our project lead, Maddy, on 0208 877 8468 who will be happy to give you some 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
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 7th November at Maple House in Birmingham. 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 2016. Find out more by visiting the HAEi website