From the early twentieth century onward, Huntington’s Disease slowly became visible in the Middle East, although it remained largely unrecognized by local health systems. Medical reports from Saudi Arabia, Oman, Syria, Lebanon and Egypt gradually confirmed that the disease was present in the region, but it was often misdiagnosed or hidden within families due to stigma and lack of awareness.

Even so, clinicians began to notice patterns of involuntary movements, psychiatric symptoms and hereditary transmission that matched the global understanding of Huntington’s Disease. Despite this, the condition still remains under‑reported, and several countries in the region had no formal documentation at all, not because the disease was absent, but because diagnostic capacity and awareness are limited.

In 2019 the first meeting about Huntington took place as an online meeting.  The meeting was organized and sponsored by Cairo University and The International Huntington Association. Soon after the meeting the president of IHA was contacted both by a family member and professionals from King Faisal Hospital. They encouraged the IHA to start an awareness campaign for Huntington Disease in the MENA region. In July 2019, Clineart, Dubai, released a report which led to an article saying “Egypt Leads World in Huntington’s Prevalence, But Lacks Clinical Trials on the Disease, Report Says”.

Awareness grew slowly, and small networks of clinicians and advocates emerged, but the region still lacked a unified voice. Families often faced the disease alone and countries didn’t own any national associations or formal support structures. Despite this, momentum was building. The combination of scientific discoveries, increased visibility and growing collaboration created the foundation for a regional movement.

In 2024 The President of IHA, Svein Olaf Olsen, met with Sheik Nahyan bin Mubarak al Nahyan, Minister of Tolerance, and they got to discuss the problems people living with Huntington Disease face in the region.

In 2025 his Excellency Mansoor Ibrahim Al Mansouri, Chairman of the Department of Health – Abu Dhabi (DoH) and Dr. Fahed Al Marzooqi, Deputy Group Chief Operating Officer of M42 announced that they would support IHA in their effort to do the the first-ever clinical trial for Huntington’s disease (HD) in the UAE and MENA region. This was a game changer for the development of awareness of Huntington’s Disease. Burjeel Holdings, by Burjeel Hospital in Abu Dhabi will conduct the clinical trial and the first participants enrolled in late April 2026.

The movement reached a historic milestone in March 2026, when representatives from several Arab countries came together to establish the Arabic Huntington Association. The founding meeting brought together individuals from Egypt, Oman, Saudi Arabia, the UAE, Libya, Morocco and Algeria, marking the first time the region had a coordinated, cross‑border organization dedicated to Huntington’s Disease.

The new association was created to support families, raise awareness, strengthen clinical capacity and build bridges between researchers, clinicians and policymakers across the Middle East and North Africa. With its creation, the region gained not only a formal structure but also a shared identity and mission in the global Huntington community.

The founding of the Arabic Huntington Association represents the culmination of more than a century of scattered observations, isolated cases, scientific breakthroughs and growing awareness. It marks the moment when the Middle East moved from fragmented recognition of Huntington’s Disease to a unified regional effort, giving families and clinicians a platform that had never existed before.