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

Joint assembly: The joint assembly of ITACA and A.A.E.E members took place on 15 April 2023 at the university hospital of Tor Vergata, in Rome. The physicians of ITACA’s 23 centers of excellence, the board of the patient association, HAEi’s Regional Patient Advocate Maria Ferron, the representatives of the pharmaceutical companies and a large number of patients were present.

After the greetings of the authorities, Marco Mattei (Head of the Technical Secretariat of the Ministry of Health) and Andrea Magrini (Medical Director of Tor Vergata), Dr. Mauro Cancian, President of ITACA, gave a brief excursus on what is going on such as regards angioedema in Italy. He underlined that three new ITACA centers will be activated and that by the end of March, the Registry was back available. He also reminded the attendants of the importance of working with HAEi to achieve greater results and the recognition as an ACARE center of excellence.

Dr. Montinaro continued by presenting the currently available therapies and the studies in progress, highlighting that six new experimental drugs have been added in the last ten years. The new drugs can reduce attacks by 90%, and subcutaneous or oral administration significantly improve the quality of life of patients.

Dr. Zanichelli underlined that new treatments and prophylaxis therapy could better control the disease, and therefore ITACA will carry out a study on the quality of life, and an AE-Qol questionnaire will be used within the Registry to verify improvements or worsening of the disease.

Dr. Paola Triggianese concluded the scientific reports, presenting the PDTA (Diagnostic Assistance Pathway) as an essential tool for having an accurate diagnosis. The PDTA is made up of various specialists: the gastroenterologist, the neurologist, the ophthalmologist and the gynecologist.

Dr. Francesco Arcoleo managed the question-time patients/doctors where patients had the opportunity to ask both general and personal questions to clarify doubts and have certainties about new therapies that represent a great opportunity for the present and for the future.

Then followed a presentation of the organization and activities of HAEi by Maria Ferron and Nilla Ciairano, Vice President of the patient association, inviting patients to greater participation in the regional conferences managed by HAEi, which provide three paths: one for patients and caregivers, one for young people (12-15 years) and a scientific path.

Carlotta Cicardi, who manages the secretariat with Martina Perera, presented the activities carried out in 2022 and the future activities of 2023:

  • registration campaign of 2022, which provided the association with a 32% increase
  • our first joint assembly in 2021 in Padua
  • management of social pages and website
  • collaboration with external companies (as workshop focused on QoL in collaboration with ATRAST)

The Assembly was concluded by President Pietro Mantovano, who asked for 2022 report approval and then presented:

  • relations with external organizations (Telethon etc.)
  • relations with ITACA and the various centers of excellence
  • relations with the representatives of the pharmaceutical companies
  • ITACA Academy Project (Todi 2022) to raise new specialists in angioedema; senior physicians tutor junior physicians in order to optimize clinical disease management and improve patients’ quality of life.

Awareness day: On hae day :-) 2023, the “Angioedema Day – yesterday – today – tomorrow” conference of the doctors of ITACA in Rome was held at the Press Room of the Chamber of Deputies at the Italian Parliament, which was attended by representatives of the institutions, clinicians, and patients. We had the opportunity to present HAE to the press.

At the moment, the disease is underestimated by the population and sometimes also by medical personnel; therefore, more information is needed, and the title of the awareness day was: “Knowledge is not rare”. Doctors had the opportunity to illustrate the disease, how it manifests itself, how it is treated, and the objectives that science sets intend to achieve for early diagnosis and how to improve the quality of life of patients.

The patient association has invited the institutions to allow the use of the new drugs throughout the country, avoiding differences from region to region.

During the event, the initiatives to be held on 20 May 2023 for the Angioedema Day promoted by ITACA were presented, in particular the “Patient Card”, a new IT tool with all the patient’s personal clinical data. Through a QR code, general practitioners and emergency room personnel can access a section of the ITACA web portal and have all the correct information on how to intervene in the event of an acute attack of this rare pathology.

On www.angioedemaitaca.org there are videos and press releases from dozens of newspapers.

Angioedema Day: The Angioedema Day held on 20 May 2023 aimed to raise awareness and create attention towards our disease. Angioedema is managed by different specialists including above all allergists, immunologists, and internists. During the day, patients could go to the specialized health centers of the ITACA network for a check-up or for a first contact with the specialists.

The main objective of this day is to facilitate access to the nearest ITACA center, improve disease management and quality of life.