US Hereditary Angioedema Association

Life with a rare disease like Hereditary Angioedema (HAE) often presents unique challenges. If you have found yourself feeling stressed or overwhelmed because of HAE you are not alone!

The HAEA CARE Groups were created to offer Community, Acceptance, Respect, and Empathy for individuals with HAE and their caregivers who wish to connect with other community members. In addition to being a space for communal support and solidarity, we also encourage sharing ideas for navigating challenges such as explaining HAE to individuals who haven’t heard of it, struggling with access to medication, and making time for our physical and emotional self-care.

Here is what some of our CARE Groups participants had to say about their experiences:

“We all have times when we think it’s all too much to deal with. The CARE Groups give us another opportunity to help each other and to get help.” -Anita W.

“(The HAEA CARE) Groups have helped me in more ways than I could have imagined through releasing fear and doubt. ” -Aysha B.

The HAEA CARE Groups are held virtually three times a month through Zoom. You can find the regularly scheduled times below:

The first Wednesday of the month at 7:30 PM EST / 4:30 PM PST,
The second Thursday of the month at 11:00 AM EST / 8:00 AM PST,
And the third Tuesday of the month at 10:00 PM EST / 7:00 PM PST.

Any changes to these regularly scheduled times are included in the monthly HAEA newsletter whenever possible.

Interested in joining one of these monthly groups? Contact an HAEA Health Advocate for more information by calling 866-798-5598 or emailing an advocate at health@haea.org.