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

 

HAE UK Fundraising Leaflet

Download the HAE UK Fundraising leaflet

 

Key Medical papers

 

2016 Commissioning Policy for Prophylaxis

2014 UK Revised Consensus Guidelines for the Management of Hereditary Angioedema

2014 Commissioning Policy Summary for the management of acute attacks of Hereditary Angioedema

2013 Clinical Commissioning Policy for the Management of HAE

2011 HAWK Consensus Document

2010 Home Therapy Consensus Document

 

Links to other HAE web sites

HAE International This website has links to all other National Member Organisations and Patient Groups

U.S HAE Patient association

The San Diego HAE Centre

All About HAE website

The Faces of HAE website 

Me not HAE website

 

HAE UK works in close co operation with the following organisations

HAE International

UK Primary Immunodeficient Patient Support Association (UKPIPs)

Genetic Alliance

Primary Immunodeficiency UK

Anaphylaxis Campaign

Allergy UK