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
Currently, the patient guide exists in English, but the plan is to introduce more languages.
If you want to translate the ‘Understanding HAE’ patient guide to 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.
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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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