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: firstname.lastname@example.org 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
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 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 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