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The Lived Experience of Women who have Hereditary Angioedema
HAE UK and Teesside University has invited you to take part in a unique and first of its kind study into HAE. Are you a woman who has HAE? Are you over 18? People with types of HAE are welcome to take part in the study. The study will be conducted from November 2015 – January 2016.
The study aims to gather:
- Your experience of attacks and how they have affected your life, your family, your professional life and social life etc.
- Your experience of living with the condition and has how this has affected your family/family life, your professional life, relationships etc.
- Your experience of the healthcare system and medication in relation to HAE
There has been no previous study completed on women’s living experience of the condition in which you would be the first to share your experience. You will be asked to complete a written account of your experience with HAE. The account should take approximately one hour to complete, however, you will be given two weeks to complete and return the account to the researcher.
The hope for the future of this research is to inform others and develop research into the lived experience of the condition.
If you wish to take part in this study please contact me on firstname.lastname@example.org for further details. This study has been approved by SSSBL ethics committee, Teesside University. The study is also being supervised by Stephanie Kilinc and you may contact her S.Kilinc@tees.ac.uk
Thank you for taking the time to read this and I hope you are able to help the development and furthering of the knowledge of HAE.
To take part in this research project, please download the following documents:
The Research House
The Research House are currently organising web-enabled telephone interviews which will last approximately 60 minutes with HAE patients on Thursday 10th December between 3:00pm to 8:00pm. They will receive a good compensation for their time and opinion.
This interview will be audio and video recorded and their interview may be viewed by members of the pharmaceutical company. However, we do not pass on any personal details and they will not be contacted by the pharmaceutical company after the interview has taken place. Their responses will help our client conduct analysis and interpretation for a final presentation to the pharmaceutical company regarding HAE (Hereditary Angioedema), however, no personal details will be used and your responses shall remain anonymous.
Please contact Sique if you are interested;
Sique Morgenthau | Project Coordinator
(T) 020 7487 9291
Branding Science study
Branding Science are running a study and are looking for volunteers to take part. The study will aim to explore the experiences of people living with hereditary angioedema (HAE). Please see this form 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
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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