HAE UK is an Association of HAE Patients, working together to improve the situation for all HAE Patients in the UK
follow us on Twitter follow us on Facebook
Contact us

News & events

 

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 n3060059@live.tees.ac.uk 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.

Sincerely,
Pippa Adams
Teesside University

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
sique@research-house.co.uk

 

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 study

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
Email:   stephen.hughes@cmft.nhs.uk

 

HAE UK newsletters

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

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 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

 

Hereditary Angioedema
Patient Association:
Living for today,
planning for tomorrow.

Registered Charity
Number: 1152591