HAE UK is an Association of HAE Patients, working together to improve the situation for all HAE Patients in the UK
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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 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 12

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


29th February 2016 was Rare Disease Day. Click here to see the Rare Disease Day supplement from the Independent newspaper

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



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