From Ana Freitas, HAE Portugal

hae day :-) event: The Portuguese association (ADAH) organized a symbolic walk, with the active participation of its members, to raise awareness of this rare and often invisible disease.

Special Event: May 9, at Santa Maria Hospital, Lisbon: At the Hospital de Santa Maria, a meeting for patients with HAE was held in commemoration of hae day :-). The meeting was attended by several specialists and included HAE Portugal/ADAH, who gave a presentation on the association’s bridges, partnerships, and synergies. In addition to the in-person meeting, patients also participated virtually via Zoom. At the end of the meeting, ADAH presented a song about the disease.

Artistic contribution: Renowned Portuguese musician Fernando Tordo released the song “A Esperança Chegou” (Hope Has Arrived), inspired by real testimonies from ADAH patients. The song, available on Spotify, aims to give voice to invisible pain and promote empathy and understanding⁽¹⁾⁽²⁾⁽³⁾.

This set of actions aimed to raise awareness of the disease, promote early diagnosis, and sensitize society to the challenges faced by those living with HAE.