From President Sarah Smith

In Memoriam Professor Marco Cicardi: On Sunday 15 September, AEDAF attended the “Hereditary Angioedema” Lunch Seminar of the 17th European Meeting on Complement in Human Disease, held in Madrid 14-17 September, to which Professor Marco Cicardi had been invited to speak on “New treatments for HAE”. Because of Prof. Cicardi’s unexpected death in August, the session was reorganized and dedicated to his memory. Margarita Lopez Trascasa, who had originally invited Prof. Cicardi to speak at the seminar, paid tribute to his career and his contributions to HAE in her presentation “In memoriam Marco Cicardi”. Teresa Caballero presented “Current therapeutic approaches to hereditary angioedema” and Christian Drouet talked about the “C1 inhibitor gene: impact of a high number of variants on HAE and its 3D-structure”. All three expressed their deep sorrow at Marco’s passing and at the loss of a good friend and exceptional colleague, emphasizing the lasting legacy he has left as a brilliant physician and scientist and his dedication to patients.

A Complement conference was a fitting venue for recalling all of Marco’s achievements, as the beginnings of the global HAE movement can really be traced back to another Complement conference, specifically the XVII International Complement Workshop held in Rhodes in October 1998. There Prof. Cicardi met with several experts working in the field of HAE, including Margarita Lopez Trascasa of Spain, to propose the creation of the first European Group in HAE. This early initiative led to the first C1 Inhibitor Deficiency Workshop in Hungary, which took place in Visegrad in May 1999. In a meeting almost without precedent, patient representatives were invited to that workshop, to come together with physicians, researchers and industry representatives in a joint effort to advocate for advances in HAE diagnosis, treatment and research. Then, in the wake of a poorly designed C1 inhibitor concentrate trial and in another unprecedented move, Marco Cicardi summoned several patient representatives to the XIX International Complement Workshop in Palermo, Italy in September 2002, where he impressed on us the need to establish a legally recognized international patient organization. Under Marco’s guidance, HAE International was legally founded in 2004. The rest is history. We will always be grateful for everything Marco Cicardi did for the HAE cause and we will sorely miss him. And I for one will never forget that smile. We will carry on…. but it won’t be the same without him.

Patient Workshop In Zaragoza: AEDAF will be holding its 16th regional patient workshop on Tuesday 29 October 2019 in Zaragoza, in Hotel Vincci Zaragoza Zentro, C/ del Coso 86, 50001 Zaragoza. We hope to have patients and medical professionals attending from around north central Spain, in particular the regions of Aragon, Rioja and Navarra. Zaragoza (and the region of Aragon) is now represented on the Spanish Study Group on Bradykinin-Induced Angioedema (SGBA, or its initials in Spanish GEAB) by Dr. Lucia Ferrer at the Hospital Clinico Universitario “Lozano Blesa”. She is a welcome addition to the network of HAE physicians and care centers in Spain. Another new member of GEAB is Dr. Teresa Macías at Hospital Galdakao y Usansolo of Galdakao (Vizcaya).

22nd General Assembly And Annual Meeting: AEDAF will be holding its 22nd General Assembly and Annual Meeting on 18 April 2020.