Update from the Middle East and North Africa

IHA President Svein Olaf Olsen was keynote speaker on Huntington’s Disease at the MENA Congress for Rare Diseases in Abu Dhabi last month. He spoke of the urgent need to establish a neurodegenerative centre of excellence in the region and promote clinical research. This aligns perfectly with the region’s intention to tackle rare diseases and create a regional research hub in the United Arab Emirates. 

As well as meeting HD patients and family members, Svein Olaf held discussions with Sheik Nahyan bin Mubarak al Nahyan, Minister of Tolerance and Coexistence, and met with Clinical Research Organisations ready to engage in clinical trials for Huntington’s Disease. 

Svein Olaf unveiled ambitious plans for the region, including the establishment of a self-enroll patient registry, employment of patient advocates to increase awareness of HD and the development of closer ties with other neurogenerative disease organisations.