From A.A.E.E. (HAE Italy)

Joint General Assembly and Annual Meeting: On 14 May 2022, HAE Italy (A.A.E.E.) and ITACA (Italian Network for Hereditary and Acquired Angioedema) held a General Assembly and Annual Meeting at the NH Hotel in Padua. For the first time, doctors and patients had a joint assembly that permitted them to better exchange information, news, and requests, all this possible thanks to the strong interaction between the two parties.

For A.A.E.E. members, the event was an excellent opportunity to celebrate the 40th anniversary of the Association. Actually, it was to be celebrated in 2020 but had to be postponed because of the pandemic. More than 150 people were present, and another 20 were online, which was a great success. We must thank HAEi Regional Patient Advocate Maria Ferron, who joined our meeting and presented the activities of HAEi – and we congratulate her for her good Italian.

The first part of the Assembly was an introduction by A.A.E.E. President Pietro Mantovano and ITACA President Mauro Cancian. This was followed by doctors’ reports from Andrea Zanichelli (Angioedema National Registry), Francesco Arcoleo (Available therapies and ongoing studies), Massimo Triggiani (Quality of Life), and Mauro Cancian (Angioedema in Italy and in the world).

The question time that followed the doctors’ reports resulted in a widespread exchange of experiences between the attending patients, members of the Association, and doctors. This section was very well appreciated by patients for the good relationship with the scientific panel. By sharing doubts and questions, patients, regional patient advocates, and doctors could open new doors for improvement and shared solutions.

One of the topics of greatest interest was the National Patient Registry. Already developed a few years ago by Prof. Cicardi and currently under reconstruction and updating by ITACA, it is based on a new data culture to provide higher data quality and easier user access.

The second part of the Assembly was run by Pietro Mantovano, who presented the Association with an overview since its foundation in 1980 and how it improved over the years thanks to our unforgettable Prof. Marco Cicardi, without whom nothing would have been done. The A.A.E.E. President presented the different activities carried out and supported by the Association, such as support for ITACA.

The associative budget with the related expense and entrance notes were unanimously approved. For 2022-23, a scholarship in honor of Prof. Cicardi has been announced to be allocated to a professional/specialist dealing with angioedema in Italy.

The secretaries Carlotta Cicardi and Martina Perera contributed with realized activities supported by the Committee Board:

  • Activation of the Telegram Channel
  • Survey on Reference Centers
  • The Christmas gift from the A.A.E.E., the novel “Dreaming Toronto”, a love story written by a patient of ours whose protagonist is a girl suffering from HAE (photo)
  • Personalized gadgets
  • Participation in the second ITACA National Congress 16-18 December 2021 in Rome
  • Participation in the UNIAMO project for the Rare Disease Day
  • The UNIAMO Well-being project promoted by CSL Behring – a service of online fitness for people with rare diseases and their families

A Survey on the Reference Centres was sent to all 2021 and 2022 members. It consists of eight questions about the centers’ degree of satisfaction/dissatisfaction. The responses were analyzed and collected in a single document that was then divided for each center and shared with the doctors of ITACA. The results have had substantial importance in improving the reference centers’ individual services.

According to data, we have evidence that 24% of the patients have registered with the Association for the year 2022-23.

Following the answers to the survey’s open question, a telematics psychological counseling service so whoever wishes can get in touch with Dr. Licata.

Maria Ferron and Marco Castiglioni Roffia, who is responsible for A.A.E.E.’s foreign relations, concluded the meeting by presenting the activities we have joined and the importance of being connected to HAEi.

Awareness campaign: For hae day :-) 2022 ITACA and A.A.E.E. organized an information campaign. Among other things, this included that hospital departments such as specialized centers for HAE treatment all over Italy opened their doors for visits and laboratory analyzes. 

ACARE Center: Italy has its first ACARE center. That is Allergolog  ia e Immunologia Clinica nell’Università di Cagliari in Cagliari lead by Prof. Stefano Del Giacco. Please see the country page for Italy for contact information. 

Global activities: The board of the Association has been invited to participate in the HAEi activities and the youngsters’ program at the HAEi Global Leadership Workshop in Frankfurt, Germany, in October 2022.