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: support@haeuk.org and we will be happy to send one to you.

HAE diary

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.

Download the HAE UK weekly attack diary sheet

Doctor’s letter

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.

Dentist’s letter

You should ask your specialist for a letter to your dentist explaining the precautions and treatment needed to keep you safe.

A&E Card

In conjunction with UKPIN, HAE UK have produced an individualized A&E card for HAE UK registered members. These photographic identification cards are designed to improve emergency care for patients with HAE and will also tell first responders the patient has HAE and how to treat them in the event of an emergency. The card will also contain details of the patients’ consultant, should the A&E clinician need to get in touch with them regarding treatment. To apply for a card please contact Rachel via e-mail: rachel.annals@haeuk.org

Medicalert

It is important for HAE patients to always carry a doctor’s letter or a medic alert or similar pendant.

Visit the Medicalert website

Visit the Universal Medical ID website

HAE Specialists

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

Information about Berinert

Information about Cinryze

Information about Ruconest

Information about Firazyr

Emergency guidelines in other languages

Basic HAE information in different languages can be downloaded below:

– English

– French

– Spanish

– Italian

– Portuguese

– Dutch

Children and young people

Download Education and Welfare Guidelines

Download an example of a personalised school care plan

Download an example of additional School’s information to cover school trips

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.