The recent months have been busy with plenty of advocacy activities for patients in Central Eastern Europe, Benelux and the Middle East. This period was full of virtual meetings with member organizations, both individual and group, during which we discussed important projects delivered and implemented by HAEi. It is truly amazing to be part of the activities that involve patient organizations, patients, caregivers and physicians from so many countries.  

An important element of the HAEi strategy, related to the decentralization of our activities, is the formation of the Regional Medical Advisory Panels in each of the regions supported and covered by the global organization. I am delighted to inform you that thanks to the intensified activities, it was possible to invite and confirm the participation of many expert HAE specialists in the Regional Medical Advisory Panel for Central Eastern Europe, Benelux and Middle East. We expect to have inaugural meetings very soon.  

In addition to various virtual meetings, I am constantly working on implementing HAEi resources and projects so that each patient has access to the latest information regarding HAE. Also, we have taken the first steps related to the preparations of a website dedicated to the Middle East and North Africa regions and the organization of the 2021 HAEi Virtual Regional Workshops for the Middle East, North and Sub Sahara Africa. In these two projects, I enjoy working with my colleagues Maria Ferron and Patricia Karani.

I am happy to announce that HAE Jordan has joined HAEi as member number 93. Mr. Bassam Mohammad Alelimat represents the organization. Just after entering the global organization, HAE Jordan launched its website hosted by HAEi.

In a joint effort with HAE Belarus, the first modern therapy (plasma-derived C1-INH) for HAE patients has been registered in Belarus. Furthermore, the president of HAE Belarus, Irina Ausianik, presented the patients’ perspective during a virtual conference organized by Takeda in February 2021. The conference was dedicated to health care professionals from Belarus, Kazakhstan and Ukraine. 

In collaboration, HAE Kazakhstan and Takeda have set up the diagnosing program for HAE patients in the country. Also, the process of C1-INH registration is about to take place, and HAE Kazakhstan hopes it will soon have the medication registered. Also, HAE Kazakhstan has organized a successful virtual meeting for HAE patients.

HAE Lithuania is the first member organization from Central and Eastern Europe to implement the HAEi Emergency Room Poster. The poster was translated into Lithuanian, and HAEi covered the costs of production. 

HAE Egypt has taken steps to support the registration of plasma-derived C1-INH, the first HAE therapy in the country for people living with HAE. Supported by HAEi, the organization has sent an official letter to the Egyptian Ministry of Health, H.E. Dr. Hala Zayed, emphasizing how important access to modern treatment options is for HAE patients. 

And finally, some excellent news from HAE United Arab Emirates: Thanks to the involvement of the member organization, local health care professionals, the hospital, CSL Behring and myself, it was after months of shortages possible to deliver plasma-derived C1-INH to the Mediclinic City Hospital in Dubai.

>> Meet the Regional Patient Advocates