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
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