I have informed the patient representatives in my region about the HAE TrackR app and sent them the files for translation. So far, we have the app translated into Serbian and Turkish – and expect to have it available in Macedonian very soon.
HAE Greece has received its registration documents and is now an official organization. I was asked to support in re-accessing the HAE Greece website hosted with HAEi so that the Greek organization can start announcing its initiatives.
A press conference titled “Equal chances of treating patients with a rare disease” was held on 15 June 2021, organized by the National Organization for Rare Diseases of Montenegro and HAE Montenegro. The conference addressed (1) Rare diseases in Montenegro from the point of view of oncologists and the importance of modern therapy, (2) Rare diseases in Montenegro from the point of view of allergists and the importance of modern therapy, (3) Equal treatment opportunities for people with rare diseases, (4) Rare diseases from the patient’s point of view, and (5) Legislation. The event was one in a series organized to change the legislation and enable re-gaining access to modern therapies for HAE patients alongside other rare disease patients.
HAE Macedonia has received preventive treatment for pediatric patients for the first time. Hopefully, this will open the door for other patients to gain access to preventative therapies.
HAE Croatia is proud to announce that due to intensive media coverage in the light of the hae day :-) the organization has assisted in one more patient being diagnosed with HAE. The patient read a newspaper interview and was diagnosed after 40 years of having symptoms.
I have been invited to and participated in two sessions of Takeda’s 10th meeting for nurses from Europe and Canada, “Connect for care: The evolution of rare disease nursing: Patient perspectives” (6 July) and “The impact of COVID-19 on HAE nursing and patient care” (7 July). Also, I presented about “Unmet needs in HAE care – patient perspective” (7 July).
Before the end of the summer period, I informed patient organizations and patient groups in my region about all the interesting training courses made available by HAEi through HAE Advocacy Academy. Each country received their unique code to access training courses that will enable them to read and learn about different advocacy tools.
