The patient organization HAE Junior to hold an art exhibition named "Stronger than HAE" as part of the Rare Disease Day 2022 campaign. Rare Disease Day takes place every year at the end of February. This awareness campaign is a global initiative organized since 2008 by EURORDIS and 65+ national alliance patient partners, represented in the Czech Republic by the Czech Rare Disease Association (ČAVO).
This year, HAE Junior patient organization, as a member organization of both ČAVO and EURORDIS, joins this global awareness movement with "Stronger than HAE" art exhibition, available on display from 18 February to 11 March 2022 at Motol University Hospital, Prague and the 2nd Medical Faculty of Charles University. This exhibition aims to raise awareness of the rare disease hereditary angioedema (HAE) among physicians and medical students. In 2022, HAE Junior’s awareness efforts are to be strengthened by an article about HAE Junior published in MOTOL in (the hospital monthly journal), as well as by the new HAE Junior ambassador Anežka Dašková – a medical student and at the same time a popular influencer and YouTuber.
“The purpose of HAE Junior is to enable Czech children and young people diagnosed with HAE to live a normal and fulfilling life. We want to raise HAEroes – heroes who can fulfil their life potential, in spite of living with HAE. We believe that raising awareness about the rare immunological disorder – hereditary angioedema – will help improve the long-term cooperation with healthcare professionals, gain greater public understanding and moral support for patients' families. HAE patient families often fight not only with the disease, but also with other obstacles that HAE brings into their lives, ”explains HAE Junior founder Camelia Isaic.
This exhibition follows the successful Rare Disease Day 2021 campaign, when HAE Junior sought to raise awareness by sharing HAE patients’ insights via videos and banners. Patients from the Czech Republic and abroad thus had the opportunity to share their stories on living with HAE. In addition, on Friday, February 26, 2021, the patient story "Chronic absentee with poor grades" was published in the supplement of the Czech daily newspaper Hospodářské noviny named "Jsme vzácní".
The partners of HAE Junior’s art exhibition for Rare Disease Day 2022 are University Hospital Motol, Patient Worthy and Hello bank!
About HAE Junior:
HAE Junior patient organization was founded by parents of children with hereditary angioedema (HAE) in December 2019 in Prague. HAE is a rare lifelong disease with frequent swelling in various parts of the body. It is not only a health burden, but often also psychological and social limitations, such as frequent absences from school education or obstacles to employment. The mission of HAE Junior is to enable Czech children and young people diagnosed with HAE to live a normal and fulfilling life.