From Natasha Jovanovska Popovska, HAE Macedonia HAE Macedonia – association of patients and families with HAE – celebrated hae day :-) by organizing a visit for HAE patients and their families to the Lesnovo Monastery and the nearby caves in Macedonia. The event raised great interest among patients with HAE and their families and [...]
From Regional Patient Advocate Javier Santana Since 2022 the group of patients and HAE specialist doctors have held multiple meetings with government officials to discuss the shortage of HAE medicines. Despite the constant promises to resolve the situation of drug shortages, the Panamanian government still evades its responsibility to provide patients with HAE with [...]
From Regional Patient Advocate Michal Rutkowski Great news from Lithuania regarding access to modern HAE therapies: As of 1 January 2023, icatibant is reimbursed for Lithuanian HAE patients, and as of 1 March 2023, lanadelumab is also reimbursed for people in Lithuania suffering from HAE.
From Chairman Soojin Min, HAE Korea I congratulate HAEday2023 #active4HAE on an impressive achievement in Korea! We are pleased that the number of steps for hae day :-) reached 647,966, with over 280 people participating. By coming together and participating in this event, we have not only contributed to our own welfare but also [...]
From President Mihaela Šogorić, HAE Croatia On 13 May 2023, an electoral assembly was held in Tuheljske Toplice where the Board of Directors was elected. With Ante Čobanov as Vice-President and Saša Pavlić as Secretary of HAE Croatia, I was elected President for another term. After the assembly, doctors dealing with HAE arranged a [...]
From HAE Thailand For hae day :-) 2023, Siriraj Urticaria and Angioedema Center organized and disseminated a poster and video on the topic “Hereditary angioedema (HAE) knowledge for physicians”. These informative materials aimed to educate physicians about essential aspects of HAE, including its signs and symptoms, diagnostic investigations, and treatment. The distribution of these [...]
From HAE Canada The first event of the year was the 2023 American Academy of Allergy, Asthma & Immunology (AAAAI) Annual Meeting in San Antonio, Texas, United States. Thank you to Suzanne Kelly of Red Maple Trials, who presented the HAE Canada poster on our behalf, titled “Emergency room visits by patients with HAE [...]
From President Elena Bezbozhnaya, HAE Russia In recent months, HAE Russia has expanded to include new members. Over the seven years of its existence, we have already united more than 300 participants. We try to do our best so that our patients with HAE are not left alone with their disease and related problems. [...]
From RPA Fernanda Oliveira de Martins I was invited to participate in a meeting organized by HAE Peru 27 February 2023. The main topic of the meeting was HAE in school children. I congratulate the organizers and invite everyone to watch the recording of the meeting (in Spanish) here. From Directora General Carla M. [...]
From RPA Javier Santana The situation regarding HAE medications continues to develop drop by drop. After a meeting held last year between the group of patients, rare disease patient associations from Costa Rica, the Minister of Health, the Medical Directors of the country’s main hospital, Government representatives, and myself, the entry of Berinert and icatibant [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
HAE International (HAEi)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
gro.ieah@ofni
HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
