Understanding HAE

During the 2022 HAEi Global Leadership Workshop, HAEi Executive Project Manager Jørn Schultz-Boysen presented the patient guide ‘Understanding HAE’ fresh from the print shop.

“Our new patient guide is a good example of ideas often coming from the bottom up as it is based on requests from Member Organizations looking for a comprehensive brochure with a full description of HAEi and HAE matters”, says Jørn Schultz-Boysen.

The patient guide contains a presentation of HAEi and, not least, the many resources offered by HAEi: HAE TrackR app, Emergency Cards, HAE Companion app, Global Access Program, website and social media, the hae day :-) global awareness day, the Global Perspectives magazine, HAE conferences and workshops, and the HAEi Youngsters’ Community.

In addition to a presentation of the HAEi resources, this is the content of the patient guide:

  • HAE types
  • HAE symptoms
  • Attack triggers
  • Diagnosing HAE
  • Treatment options
  • HAE and children
  • Women and pregnancy
  • Traveling

The patient guide is in English, and the plan is to introduce more languages over time – see the list of translated versions below.

If you want to translate the ‘Understanding HAE’ patient guide into your own language, reach out to your Regional Patient Advocate, who can help you with a template for translation.

HAEi thanks the US HAEA for their significant contribution to the content of the ‘Understanding HAE’ patient guide.

>> Download and read the guide ‘Understanding HAE’ (pdf) – in English

>> Download and read the guide ‘Heredİter Anjİyoödem’İ Anlamak’ (pdf) – in Turkish

>> Download and read the guide ‘Kako Razumijeti HAE?’ (pdf) – in Croatian

>> Download and read the guide ‘Zrozumiec HAE’ (pdf) – in Polish

>> Download and read the guide ‘Todo lo queue debes saber del AEH’ (pdf) – in Spanish

>> Download and read the guide ‘Vše, co potřebujete vědět o hereditárním angioedému (HAE)’ (pdf) – in Czech

>> Download and read the guide ‘ТҚАІ ТҮСІНУ’ (pdf) – in Kazakh

>> Download and read the guide ‘Понимание НАО’ (pdf) – in Russian

>> Download and read the guide ‘KAS YRA PAVELDIMA ANGIOEDEMA (PAE; ANGL. HAE, HEREDITARY ANGIOEDEMA) (pdf) – in Lithuanian

>> Download and read the guide ‘HANO-KISOKOS’ (pdf) – in Hungarian

>> Download and read the guide ‘Razumeti HAE’ (pdf) – in Slovenian

>> Download and read the guide ‘(HAE) فهم الوذمة الوعائية الوراثية’ (pdf) – in Arabic

HAE related topics that might interest you

Global Perspectives

Magazine with timely information on the issues, activities, and events that are relevant to the global HAE community

HAEi Advocacy Academy

Courses, advocacy training, and tools to support people living with HAE and becoming an HAE advocate

HAEi Connect Member database

Free, secure online membership database and communications platform for HAEi’s member organizations

HAE Companion app

Access to HAEi’s emergency card in many languages and ACARE Centers, HAE knowledgeable hospitals and physicians

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HAEi hosted websites

Hosting of your national website or help for you to create a new website – naturally all in your native language

HAE TrackR app

Easy-to-use electronic diary of HAE treatments (preventative and on-demand), HAE attacks, and the impact HAE has on life