Research opportunity

We have been contacted by Oracle Fieldwork who are carrying out a study into the experiences of people with HAE. This study will be conducted by telephone interview and they are looking to interview five people aged 9-17 years and five people 18 years old or over. The interviews are conducted to strict protocols, especially in the case of the younger people, so you need have no worries about disclosing information to them.

If you would be interested in taking part, please contact Stella Frost on 0161 284 889 or e-mail: stella@oraclefieldwork.com as soon as possible. Stella will be able to send you all the information you will need to decide if you wish to take part. See the study recruitment letter for more information.

 

Equity and Access: Making the UK a Rare Disease Leader

 

The Equity and Access document was launched last Thursday to an excellent meeting of NHS personnel, pharmaceutical companies, other health charities and MPs.  Ben Howlett MP who chairs the All-Party Parliamentary Group on Rare Diseases spoke via a web link. You can read the full Shire ‘Equity and Access – Making the UK a rare disease leader’ document here. If you don’t want to read the whole document, this Equity & access infographic gives an excellent summary.

 

We would really like those of you who have time to write to your MP (if you’re not sure who your local MP is, you can find them here) because they will be debating about Rare diseases and Treatment on Wednesday 29thMay between 4:30pm and 5:30pm. Genetic Alliance have produced an excellent template letter that you can use to e-mail to your MP which you can find here: Westminster Hall Debate letter.

 

Your Health with HAE

HAE UK, in conjunction with Teesside University, is inviting you to take part in a unique and first of its kind study into HAE: YOUR MENTAL HEALTH WITH HAE.

 

This study has being organised by Philippa (Pippa) Adams, who many of you may remember conducted a similar survey on Women with HAE last year, with great results.

 

We really encourage you to take part in the survey to help us further understand the effects of living with our rare disease. Please see this advert for more information, and get in touch with Pippa to take part

 

HAE Dissertation

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 UK Newsletter Issue 17

HAE UK Newsletter Issue 16

HAE UK Newsletter Issue 15

HAE UK Newsletter Issue 14

HAE UK Newsletter Issue 13

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

 

Events

The next HAE UK Patient Day is to be held in November. More details will be available soon.

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