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HAE is a Family Affair: How We Can Drive Progress for Families Together

Dad carrying daughter on his shoulders

Hereditary angioedema (HAE), a rare disorder that results in recurrent episodes of swelling in various parts of the body like the face, hands, throat and abdomen, can impact generations of families.1,2 In fact, about 75% of cases are inherited; most of those living with HAE also have a family member with the rare genetic disorder.2

“Over the years, we have had the opportunity to meet many of those living with HAE and heard from them directly about HAE’s impact on their lives,” said Tony Melo, vice president, U.S. Hereditary Angioedema Franchise, Takeda. “Parents and caregivers have told us watching their children struggle with HAE attacks was extremely difficult.”

While HAE attacks can occur at any age, the onset of symptoms occurs most often during childhood. Managing HAE can be difficult for kids and adolescents. They may try to hide their attacks if they feel embarrassed or don't want to worry their parents or caregivers. They may also avoid social situations or miss school because of the fear of having an attack in front of others.3

The number of HAE treatment options has increased over the years, starting in 2008 when Takeda championed the first FDA-approved medicine to treat HAE. Even as HAE treatment continued to progress, there was still a significant unmet need for young children.

"In many of my conversations with the community, it is clear this progress was not felt across all ages and the toll HAE takes on families is variable and unpredictable," Melo said. “Knowing there was a need for effective prevention, it was vital for us to continue our efforts to ensure the broadest range of patients had options to help treat and even help prevent HAE attacks.”

Takeda has worked tirelessly to support the HAE community in an effort to reach as many lives affected by this disease as possible and is proud of our recent progress to impact young children. Parents can now work with their health care providers to develop individual management plans to meet the needs of their children – something that wasn’t possible even a decade ago.

“Takeda has championed for rare disease communities for more than 70 years, and we are immensely proud of our efforts on behalf of the HAE community,” Melo said. “We remain dedicated to supporting those with HAE – and their entire families – every step of their journey and will continue our efforts to make a positive impact for this resilient and honorable community.”

  1. Banerji, A. (2013). The Burden of illness in patients with hereditary angioedema. Annals of Allergy, Asthma & Immunology. 111: 329-336. doi: https://doi.org/10.1016/j.anai.2013.08.019
  2. Manning, M. (2020). Hereditary angioedema: Differential diagnosis, diagnostic tests, and family screening. Allergy Asthma Proc. 41:S22-S25. doi: 10.2500/aap.2020.41.200062.
  3. Johnston, D., Smith, R.C. (2020). Hereditary angioedema: Special considerations in children. Allergy Asthma Proc. 41:S43-46. doi: 10.2500/aap.2020.41.200042.