Social Media

Social media is about sharing stories, news and offering support.

Social media has evolved at an astonishing rate and the US HAEA is always works to provide the best communication platforms possible for our patient community. We hope you will take advantage of the various social media outlets we make available to our members to share HAE stories, news and events, information and to offer support to one another.

It is important for you to remember that these are public forums — they are not HIPAA compliant — and although we try our best, we cannot guarantee your privacy. Any questions regarding medical difficulties, physician referrals, medicines, etc. should be directed to your Patient Advocate.

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    Follow @TonyJCastaldo

    Follow @US_HAEA

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    Follow US_HAEA

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    HAEA Café

    The HAEA Café is an online community for HAE patients and families.

    At the Café, you will be able to:

    • chat live with your Patient Services Team Member
    • participate in webinars on issues like product access and reimbursement
    • check out the latest HAEA news
    • participate in virtual support groups

    You will be welcomed with a warm cup of compassion and a menu of resources.

    Visit the HAEA Café – the new hot spot in town!

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    DiscussHAE is a private email support group (listserv) for US HAEA patients, family members, and caregivers, providing an open forum for information sharing, emotional support, and frank discussions on all issues facing the HAE patient community.

    Our list coordinator independently verifies that new members are members of the HAEA community and make every effort to maintain patient privacy.

    Subscribe to DiscussHAE today!


Jump to our sections with comprehensive content and learn more


What is HAE

Get to know the disease: symptoms, diagnose, treatments and more

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For healthcare providers. Knowledge, CME-programs and more

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Living with HAE

Care takers and givers: HAE will affect your life - But you can still be in control.

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Our area with a lot of usefull information

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