By Michal Rutkowski, HAEi Regional Patient Advocate Middle East & Gulf Region, and Rashad Matraji, HAEi Contractor Patient Advocacy

 The intro into the new year was fascinating for the Middle East and Gulf Region HAE Community as the 2020 HAEi Middle East and Gulf Region Workshop took place 9-10 January at Crowne Plaza Muscat OCEC venue in Oman. The meeting was dedicated to patients and caregivers with the presence of HAE physicians from all the region, and the local media covered the workshop.

The keynote speakers were Dr. Fares Zaitoun, First President of the Pan-Arab Society of Allergy, Asthma & Immunology, Dr. Salem al Tamemi from Sultan Qaboos University Hospital in Muscat, and HAEi Executive Vice President and Chief Operating Officer Henrik Balle Boysen (online). Furthermore, we both had the pleasure of being keynote speakers.

Patient stories were delivered by Mubarak Alajami (from HAE Kuwait), Ellie Stott (from HAE United Arab Emirates), Ameera Alawad (from HAE Qatar), Husam Alhmooda (from HAE Qatar), Ahmed Lotfy (from HAE Egypt), Navin Goyal (from HAE United Arab Emirates), Nour Elchami (from HAE Lebanon), and Najlaa Alshaikh (representing Saudi Arabia).

The two days were divided into break-out sessions focusing on Advocacy, Science, and Awareness:

First day

  • Henrik Balle Boysen welcomed the attendees and explained who HAE International is and what value the global organization brings to the HAE patients, caregivers and physicians
  • Dr. Fares Zaitoun highlighted the scientific part and the awareness required among the physicians in order to identify and diagnose more HAE patients
  • Michal Rutkowski spoke about the different roles the patient advocacy has taken in the region and explained about all HAE International’s ongoing programs and projects
  • Rashad Matraji gave a motivational presentation on how patients, together with physicians, can fight the burden of HAE and how successful it can become.

Second day

In the general session for patients, caregivers and physicians, the stage was given to patients who spoke about their personal HAE journey. This part of the session was very impressive for everyone and significantly educational on many levels. The patient stories were followed by a presentation made by Dr. Salem al Tamemi, who shared the background of HAE, focusing on types of angioedema, diagnosis process, symptoms and treatment therapies.

In a break-out session for patients and caregivers, there was a regional perspective focusing on the role of patients’ advocacy, implementation of HAE International’s tools such as web hosting and HAEi Connect, and also a group discussion on challenges and opportunities in the region.

Another break-out session for health care professionals focused on topics like medications availability, patients’ registry, diagnosis approach, awareness campaigns, patients’ organizations, as well as regional studies and surveys.

All participants emphasized that the 2020 HAEi Middle East & Gulf Region Workshop turned out to be the best meeting of all organized so far; Motivated patients, caregivers and physicians speaking one voice in order to make a milestone step along the path to HAE medications availability. This years’ workshop was also an opportunity to meet and exchanged experience with biotech representatives. One of the most active HAE pharmaceuticals companies in the region is Takeda, who took part in the event, listening to the patients’ current needs and expectations.