Help us produce the insurance information you need!

Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Patients and families affected by genetic conditions often find it difficult or impossible to access appropriate or affordable insurance cover.

Many patients are not aware what insurance companies are allowed, or not allowed, to ask them, or what they need to tell them when applying for insurance.

Genetic Alliance UK is now running a survey to understand patients’ experiences including any challenges they face, or concerns they have, when applying for insurance.

This information will help Genetic Alliance UK to update the resources available on their website to better meet the needs of the patient community.

You can take the survey by following the link.

 

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 18

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 at the Mercure St Paul’s, Sheffield. More details about this popular event is available on the events page.

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 Vienna in May 2018. Find out more by visiting the HAEi website