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A documentary made for the community, by the community

We know people with HAE are resilient. But living with HAE attacks can be tough, even if you don't always show it.

So, we asked the community to help us open the dialogue about the reality of what it's like to live with HAE.

What do you wish people knew about living with HAE?

Help us keep the conversation going. Click below to submit the questions that you wish people would ask you about your attacks. Or, upload a self-recorded video about your experience living with HAE.

Join the conversation

Hear what others are sharing

Summer Tips & Tricks


Talking to Your Doctor


Still having attacks, despite preventative medication?

You're not alone. Hear from people like you, who are navigating living with the unpredictability of HAE.

Hear their stories

References: 1. Betschel S, van Kooten S, Heckmann M, Danese S, Goga L, Guilarte M. Remaining burden of hereditary angioedema (HAE) attacks despite modern long-term prophylaxis. Abstract presented at: EAACI 2023 Hybrid Congress, June 9-11, 2023; Hamburg, Germany. Allergy. In Press. 2. Betschel S, van Kooten S, Heckmann M, Danese S, Goga L, Guilarte M. HAE patients decision to carry on-demand treatment when away from home. Abstract presented at: 13th C1-inhibitor Deficiency & Angioedema Workshop, May 4-7, 2023; Budapest, Hungary. Allergy Asthma Clin Immunol. In Press. 3. Longhurst H, Bouillet L, Cancian M, et al. Hereditary angioedema attacks in patients receiving long-term prophylaxis: a systemic review. Presented at: APAAACI October 23-26, 2023; Singapore. 4. Maurer M, Aberer W, Caballero T, et al. The Icatibant Outcome Survey: 10 years of experience with icatibant for patients with hereditary angioedema. Clin Exp Allergy. 2022;52:1048-1058. doi:10.1111/cea.14206

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