From Olena Mykal, President of the Ukrainian Patients Association for HAE:
In 2017 HAE patients established an association in Ukraine. The major goal of the association is to get access to the medications and diagnostics as well as spread awareness about HAE among doctors and the general public in Ukraine. On September 23, the association had its first general meeting. The patients elected the members of the executive committee and voted for the signing of the memorandums on cooperation with the Ukrainian NGO “Rare Immune Diseases” and HAE Poland. Dr Zabrodska, who is a leading doctor on HAE in Ukraine, gave a presentation about the disease and instructed how to behave during the severe attacks. She also distributed a brochure on how to perform a tracheotomy in case of laryngeal edema and no access to medication, which is a case in Ukraine.
In cooperation with the Centre of Upper Airway Diseases of the Institute of Otolaryngology of Ukraine, our association has issued a patient card for HAE patients with an explanation of the disease and instructions for the doctors on what to do in case of severe attacks. Now each patient member of the association has such a card.
Presently, the Ukrainian HAE Association has 25 members, 21 of them patients.
