From Regional Patient Advocate Maria Ferron
This period has been really exciting and active for several reasons. Firstly, due to changes in the pandemic situation, we are allowed to go back to more face-to-face meetings, and it is nice to see again members of our HAE community. Also, after more than two years, the HAEi Regional Patient Advocates met again in person in May 2022. And finally, because many activities have been organized around the world celebrating hae day :-) 2022.
On 14 May, I had the pleasure of being invited to an HAE patient meeting held in Padova organized by A.A.E.E. (HAE Italy) and ITACA (the Italian Network for Hereditary and Acquired Angioedema). After two long years of pandemic shutdown, I was pleasantly surprised to see how many attendees joined the meeting (face to face and online). We were around 70 attendees on site. The ITACA team informed that they already have 21 centers around the country; they have been organizing training courses for pediatricians and planning to organize during September or October HAE Academy for doctors. Furthermore, there is contact with ACARE to maybe become a member of that network.
During the sessions dedicated to the association, President Pietro Mantovano encouraged the audience to talk to family members, caregivers, and the HAE community, in general, to become members of the association as the number of members is relatively low when compared to the number of patients diagnosed in Italy. This seems, by the way, to be a common thing in the Mediterranean countries. Also, Carlotta Cicardi and Martina Perera (A.A.E.E. secretaries) went to the stage to talk about the projects done last year and to encourage young Italians to join the HAEi youngsters’ community because they believe that this is part of the organization’s future. To finalize the meeting, I was invited on stage with Marco Castiglione (Responsible for International Relations) to talk about HAEi, its tools, projects, activities, etc., and encourage patients and caregivers to participate in hae day :-) 2022. It was really nice to see some of my old Italian friends again and meet new ones.
Concerning hae day :-) 2022, there have been some exciting activities in my region. Not all of them could take place on the official date, but they still commemorated the very special HAE awareness day. Here are some of the activities:
- In Algeria, HAE Algeria decided to organize a city tour in the UNESCO world heritage city Casbah on 28 May. The organization wanted this year’s event to be more diverse in content with both cultural and fitness activities. They hit a record of about four km walk (6,000 paces and more than 400 stair steps!).
- In Portugal, ADAH decided to launch a video on 16 May called “The faces of HAE”, where Portuguese patients talk about their experiences living with HAE. >> Please check the Portuguese Facebook page to see the video.
- In Spain, AEDAF decided to organize a walk in the Madrid region on 15 May. It took place in the Dehesa de Navalvillar in the town of Colmenar Viejo. Also, those members who could not join the walk were encouraged to send other activities and time spent to AEDAF to be added to haeday.org as a total time dedicated by the AEDAF team.
- In Italy, ITACA (the Italian Network for Hereditary and Acquired Angioedema), with the support of AAEE (HAE Italy), organized over several days an “open day” where all ITACA centers were open to the patients to enter and talk to the doctors at any time.
