Links & resources
HAE Patient booklet
You can download a copy of the patient information booklet here. If you would like a printed copy please e-mail: firstname.lastname@example.org and we will be happy to send one to you.
It is useful to keep an accurate diary of every HAE attack, noting the site of the swelling. You should show this to your HAE specialist at every clinic appointment.
You should ask your doctor to give you a letter that you can take to A&E in case of a HAE attack. This letter should explain your condition and how you should be treated. It should also give your specialist’s contact details so that they can be contacted if advice is needed.
You may also wish to use this letter to explain HAE to your child’s school or to your employer.
You should ask your specialist for a letter to your dentist explaining the precautions and treatment needed to keep you safe.
An emergency card can be a quick and effective way to let healthcare professionals know that you have a diagnosis of HAE when you arrive at a hospital or care center, and the treatment that should be considered. HAEi have developed an emergency card template which you can download and complete. These can also be translated into many different languages, which is useful for taking on holiday, just in case. You can access the card by following this link.
It is important for HAE patients to always carry a doctor’s letter or a medic alert or similar pendant.
Most HAE patients are seen by Immunologists or Allergy Specialists in accredited HAE centres.
You can find an Immunologist by visiting the British Society for Immunology website.
Patient Information Leaflets
Emergency guidelines in other languages
Basic HAE information in different languages can be downloaded below:
Children and young people
Living with a rare condition: The effects on mental health
Good mental health and emotional wellbeing is important to everyone. Rare Disease UK have produced a great leaflet about living with a rare condition and the effects on mental health. You can read it here.
HAE UK Fundraising Leaflet
Key Medical papers
Links to other HAE web sites
HAE International This website has links to all other National Member Organisations and Patient Groups