As a care partner, you play an important role in your loved one’s hereditary angioedema (HAE) story

The care partner journey is a commitment that often evolves with time

Click icons to find some helpful pointers at each stage of the care partner journey.

Take care of yourself—physically and emotionally. Being a care partner is a challenge, and not one you necessarily asked for. It’s important to remember to focus on your own health as well as the health of your loved one.

Important tips for care partners

Learn different ways to support your loved one as well as how to plan for certain life events.

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Children's book library

Children's book library

If you're caring for a child with HAE, be sure to check out this children's book library developed by the US Hereditary Angioedema Association!

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Be prepared for an emergency

  • Ensure the person you’re caring for always has at least 2 doses of on-demand therapy
  • Create a written emergency plan/letter that includes
    • Your loved one’s diagnosis of C1 esterase inhibitor deficiency or hereditary angioedema with normal C1 inhibitor
    • Information on their current therapy and acute treatment preferences
    • Relevant medical contact information
  • Educate family, friends, school personnel, employers, coaches, etc, on HAE and what to do during an attack
  • Contact the local emergency room to alert them that a patient with HAE lives in the area and understand what medications they have available to treat an attack


ER toolkit

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US Hereditary Angioedema Association (HAEA)

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US HAEA Guidelines

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Angel Aid Cares

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National Organization for Rare Disorders

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Caregiver Action Network

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