Hereditary angioedema, a European initiative to shine a spotlight on a still under-recognized condition

Ahead of World HAE Day, BioCryst Ireland, a Neopharmed Gentili company, organised an international event in Milan bringing together leading experts from across Europe to raise awareness of the diagnosis and treatment of a rare, but not invisible, disease

MILAN, May 13, 2026 /PRNewswire/ -- To mark World HAE Day on May 16, BioCryst Ireland, a Neopharmed Gentili company, today announces a new initiative to raise awareness of Hereditary angioedema (HAE), a rare genetic disease affecting approximately 1 in 50,000 people^[¹^]. Leading European experts gathered in Milan for the event "HAELLO, WE'RE HEARE. It's not what it seems. Decode the rare", shining a spotlight on a still under-recognised condition.

The event highlighted the need to promote early recognition of a rare but not invisible disease, essential to enabling patients to access targeted treatments that can restore quality of life. To support this goal, the company also developed a motion graphic video (LINK) to help make the signs of the disease more recognisable.

Hereditary angioedema is characterised by sudden and recurrent episodes of swelling (edema), varying in severity and frequency, which can affect different parts of the body, particularly the face, hands, feet, gastrointestinal tract, and airways. In severe cases, laryngeal involvement can be life-threatening, with a risk of suffocation if not treated promptly. The disease is caused by a genetic mutation leading to a deficiency or dysfunction of the C1 inhibitor protein, resulting in excessive production of bradykinin, which is responsible for edema formation^[²^]. The condition is hereditary. If one parent is affected, there is a 50% chance of transmission^[³^]. However, in about 1 in 4 cases, it occurs without a family history^[³^], making recognition even more challenging.

"The unpredictability of HAE deeply impacts patients' lives, disrupting education, work and social relationships. As a hereditary condition, it also raises concerns about passing the disease on to future generations. Awareness is critical: it is the first step toward timely diagnosis" says Teresa Caballero, Head of the Hereditary Angioedema National Reference Center at Hospital Universitario La Paz in Madrid – one of Spain's three national reference centres for HAE (CSUR), alongside Hospital Universitario Vall d'Hebron and Hospital Universitario Virgen del Rocío.