From Camelia Isaic, HAE Czech Republic:
Czech patients with HAE, their families, and physicians for the first time had an opportunity to participate in an educational seminar dedicated to HAE. This meeting took place as a part of the annual patients’ meeting for patients with primary immunodeficiencies and was organized by MeDitorial agency with sponsorship provided by Shire. The event was held 9-10 June 2018 in Hotel Jezerka by the beautiful lake Sec.
The HAE track agenda was prepared under the supervision of Mu Dr Marta Sobotkova from the HAE Center at the University Hospital Motol in Prague, with the participation of medical experts from all HAE centers in the Czech Republic (Brno, Plzen, Prague and Hradec Kralove). In addition to learning more about HAE diagnose and treatment from doctors, Czech patients and their families also had an opportunity to attend two patient-led presentations: one introducing the Association of Patients with Immunodeficiency HAE/AAE (presented by Mrs Iveta Maselli) and another one on “Living with HAE: inputs from the 2018 HAE Global Conference in Vienna” (presented by myself).
The feedback from all attendees was overwhelmingly positive; patients greatly appreciated the opportunity to meet and learn more about HAE. Parents of HAE-diagnosed children showed great interest in the latest pediatric therapies and the new HAEi programs for youngsters.
At the end of the event, all participants from both the Primary Immunodeficiencies and the HAE program tracks marked the moment by letting dozens of colorful balloons fly away: a beautiful and memorable group photo opportunity!
