From Sarah Smith, President, HAE Spain (AEDAF)

April and May were very busy months for AEDAF, with preparations for multiple events to commemorate hae day :-).

Benefit Concert
Our most important event was a Benefit Concert that took place on 25 May in the Teatro Monumental of Madrid, performed by the Madrid Marine Infantry Symphonic Band. It was a magnificent concert, and we thank CSL Behring, Biocryst Pharmaceuticals, and Otsuka Pharmaceutical for their sponsorship, the AEDAF Executive Committee for all their help in the organization, particularly our Vice President, Juan Carlos Valera, who was the driving force behind the Concert, and everyone who participated in and attended the event. Very special thanks go to the Band for selflessly donating their time and superb musical skills to raise awareness and give visibility to HAE, and to their conductor, Lieutenant Colonel Miguel Angel Mateo Gijon, who took a special interest in our cause and carefully selected the musical numbers to reflect the patient journey.

The video of the Concert can be found on our YouTube channel.

“Historias Que Cuentan”
AEDAF collaborated with the CSL Behring-sponsored project, “Historias que Cuentan” (Stories That Matter), which was launched on hae day :-). The project consisted of an online patient survey (116 respondents), followed by in-depth interviews with 12 patients and caregivers.

This initiative was born from the need to give voice to these stories. Through the various narratives, patients and family members share their experiences with the onset of their first symptoms, the path to diagnosis, and how they have learned to live with the disease. These testimonies are also complemented by the survey results, demonstrating that some of the situations talked about in the individual stories are shared by the patient community.

To facilitate access to all this information, AEDAF has developed “Hereditary Angioedema. Stories That Matter,” a dedicated website, and has published an informational brochure and a booklet that contains the patients’ personal testimonies.

This campaign highlights the importance of increasing awareness and education about HAE.

#somosAEHinchas
Biocryst Pharmaceutical sponsored an incredibly successful social media campaign to educate and raise awareness about HAE: #somosAEHinchas. Hincha in Spanish means an enthusiastic supporter or fan of a soccer (football) team, but “hincha” also comes from the verb “hinchar”, meaning to swell. The campaign was launched on 10 May in the fan zone of the Metropolitano stadium in Madrid, prior to the Atletico de Madrid-Real Sociedad soccer game. With the support of the Atlético de Madrid Foundation, and on the occasion of Children’s Weekend, fans were asked to score a goal against HAE at the “somosAEHinchas” booth, where inflatables helped to show them the symptoms of this rare disease that causes swelling in numerous parts of the body. Two well-known influencers were there to encourage and animate the visitors to take part in the fun. This was then followed by a social media campaign that succeeded in reaching out to a larger-than-expected audience, with many views, shares, and likes.

Vigo (Galicia)
A General Clinical Session was held in the Hospital Alvaro Cunquiero of Vigo (Galicia) on 16 May, where Dr Alberto Rivera, Coordinator of the Multidisciplinary Functional Unit on Rare Diseases in Galicia, explained the Galician Rare Disease Strategy and Dr Carmen Marcos, head of the hospital’s Allergy Department, gave a talk on HAE. This was followed by the inauguration of the itinerant interactive exhibition “Poniendo cara al HAE” (Putting a Face on HAE), sponsored by Biocryst.

Valencia: Giving Visibility to HAE
On 16 May, the allergy team of Hospital La Fe of Valencia set up a stand in the main hall of the hospital with information on HAE, AEDAF, and HAEi, to give visibility to this rare disease. The idea was to reach out to other patients and personnel who work in the hospital to inform them about HAE and its symptoms.

“The Rare Boy and the Talkative Little Balloon”, by Natasa Angjeleska
In addition, to coincide with hae day :-), there was a presentation of the Spanish translation of HAEi’s Regional Patient Advocate, Natasa Angjeleska’s children’s book, “The Rare Boy and the Talkative Little Balloon” (“El niño raro y el globo parlinchín”). Natasa’s book was translated into Spanish by AEDAF members Patricia Rebe and Ignacio Ballester, and the translation was presented on 15 May during an online session on the YouTube channel of the University of Alicante’s Mario Benedetti Center for Iberoamerican Literary Studies. We thank Natasa for her help and enthusiasm in helping Patricia and Ignacio to translate and present her charming book, and we hope to cooperate with her in the future to continue translating into Spanish the children’s books in her series. The translation is available under Recursos on AEDAF’s website and on the HAEi Youngsters’ website.

Finally, patients and physicians gathered in other hospitals around Spain, including in Barcelona and Almeria, to commemorate hae day :-) 2025 and to raise awareness and educate about HAE. We hope to continue in future years with this level of activity and commitment to raise awareness and improve the lives of HAE patients in Spain and around the world.