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.
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 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