Pelin Incesu, area VP for the Middle East and Africa at AstraZeneca, speaks to Gulf Business about one of the region’s most overlooked neurological conditions, neuromyelitis optica spectrum disorder (NMOSD).
In this interview, she explains why the disease is so often misdiagnosed, how AI-driven imaging could transform early detection across the Gulf, and what it will take for rare diseases to gain a stronger foothold within national health strategies.
NMOSD is often misunderstood and misdiagnosed across the Middle East and Africa. From your vantage point, what are the most urgent gaps in awareness and early detection that need to be addressed in the Gulf region?
NMOSD is a life-altering rare disease that often hides in plain sight, the consequence of which is that people can wait up to a decade for a diagnosis.
A patient (typically a young woman) can walk into a clinic with sudden vision loss or severe weakness, and her MRI scan, when she eventually gets one, can look remarkably similar to Multiple Sclerosis (MS). This is one of the reasons why people with NMOSD wait years for the right diagnosis, with many misdiagnosed along the way.
To make matters worse, if we treat her for MS, we might inadvertently cause her condition to worsen.
This is the critical gap that AstraZeneca is looking to close. Partnering with MENACTRIMS and icometrix, our aim is to deploy AI-driven technology across the region that helps neurologists distinguish between NMOSD and MS from the very first scan.
From there, we will help make sure patients get the right diagnosis and the right care plan, from the very start.
Diagnosis delays for NMOSD can stretch from two to ten years. What structural or systemic challenges in the region contribute most to this delay, and how can they realistically be tackled?
It is heartbreaking for NMOSD patients to suffer these long delays, which, alongside years of uncertainty and fear, can often lead to irreversible damage that could be avoided with the right care plan.
To tackle this, we must look at two levels of challenges. First is the policy level. We recently saw a historic milestone with the adoption of the Rare Disease Resolution at the World Health Assembly, a global effort championed by the Governments of Egypt and Spain. Now we must translate this global commitment into national action. We need national policies that elevate rare diseases, including NMOSD, on the public health agenda and provide a clear framework for investing in better diagnostic pathways, data and workforce over the coming years.
But policy needs to be actionable on the ground, which brings us to the second challenge, what you might call a consistency gap. We have pockets of world-class rare disease centres of excellence, but we know that rare disease expertise is not evenly distributed. When a patient sees a doctor in a remote area, that physician may not have ever seen a case of NMOSD in their entire career and is relying on visual inspection of an MRI scan, which can be incredibly difficult when the disease markers are so subtle.
We cannot realistically expect every single clinic to have a rare disease specialist on site 24/7 – that is not a scalable solution. However, we can scale technology to bridge that gap. That is what our newly launched partnership hopes to deliver.
The upcoming partnership with MENACTRIMS and icometrix focuses on using advanced imaging technology to improve diagnostic criteria. How do you see technology reshaping rare disease diagnosis in the Gulf over the next decade?
Deployed appropriately, technology, especially AI-assisted imaging, has the power to be an extra pair of expert eyes for every clinician in the Gulf and worldwide. Today, a radiologist might have just a few minutes to interpret a complex MRI and decide whether they are looking at MS, NMOSD, or something else entirely.
Through AstraZeneca’s Partnership with MENACTRIMS and Icometrix, we are leveraging tools like AI-assisted icobrain Software, which systematically measure and compare what is on the scan, flag subtle patterns, and present that back in a clear, quantitative report.
For NMOSD, I hope that this support will move us from ‘best guess based on one scan’ to a far more confident and consistent diagnosis much earlier in the journey.
Over the next decade, I am hopeful this will evolve from pilot projects into the routine care available. A patient with suspected NMOSD in Riyadh, Dubai, or Muscat should receive an MRI using a standard protocol, analysed with AI support, regardless of where it is. That combination of smarter imaging and better data can turn rare disease diagnosis from something that depends on being lucky enough to meet the right specialist, into something that is built into the system itself.
Countries like the UAE and Saudi Arabia invest heavily in healthcare innovation and digital health. How can these ecosystems be leveraged to accelerate progress for patients living with rare and overlooked diseases like NMOSD?
The UAE and Saudi Arabia are building some of the most advanced digital health systems in the region, from population-scale genomics through the Emirati Genome Program, to plans for nationwide electronic health records and virtual hospitals under Vision 2030 in the kingdom.
For AstraZeneca, the real opportunity is to make care more equitable. When you have this kind of infrastructure, you can finally give rare and overlooked diseases like NMOSD a proper place in the system: you can link hospitals, standardise how data is captured, and start turning small, scattered case numbers into shared insights that benefit many more patients.
In practice, that means using these ecosystems to redesign the whole journey for people living with rare diseases. Another example is AstraZeneca’s partnership with the Department of Health – Abu Dhabi on establishing a Rare Diseases Centre of Excellence, which leverages the emirate’s advanced infrastructure and our global expertise to improve care for people living with rare conditions across the region.
NMOSD disproportionately affects women and appears more common among people of African ancestry, many of whom live in the Gulf as expatriates. How can regional healthcare systems adopt more gender-sensitive and culturally responsive approaches to ensure equitable access, earlier diagnosis, and better long-term support for these diverse patient groups?
Understanding which groups are at higher risk of rare diseases like NMOSD not only supports us with diagnosis, but also enables health system to build gender-sensitive and culturally responsive approaches that will take patients with neurological symptoms seriously. This includes interventions like ensuring information about NMOSD and other rare diseases is available not just in Arabic or English but in the languages spoken by major Asian and African communities in our region.
It also means using the region’s growing strength in digital health infrastructure, from national e-health platforms to virtual care models, to support continuity of care for expatriate workers who may move jobs or locations, and to connect primary health clinics with centres of excellence that are specialised to give these patients access to the quality care they deserve.
At AstraZeneca, we collaborate with our partners in the GCC to support training for frontline teams as we establish centres of excellence and leverage data more effectively. Through these interventions, we aspire to see every individual, regardless of their gender or origin, have a fair chance of early diagnosis and long-term support.
Partnerships between industry, clinicians and policymakers are increasingly shaping healthcare transformation in the region. In your experience, what makes a partnership truly impactful for patients — beyond announcing a collaboration?
Health ecosystems comprise many stakeholders, ranging from industry to government to academia. I believe the most powerful interventions are those that bring diverse partnerships together to drive change. At the same time, we must never lose sight of who these initiatives are for, so putting patients at the centre is crucial.
AstraZeneca is proud to be a partner of choice for diverse stakeholders across the Middle East and Africa, including ministries of health, scientific and academic societies, civil society and patients.
The partnership between AstraZeneca, MENACTRIMS and Icometrix is a good example of the kind of model we want to build more of in the region. Together, we are working across multiple countries to embed AI-assisted MRI tools into real clinical workflows, use the MENACTRIMS registry to better understand NMOSD and MS in our populations, and support clinicians through education and shared standards.
The goal is that patients feel the difference: fewer years spent searching for answers, more confidence in their diagnosis, and earlier access to the right treatment. For me, that is what makes a partnership genuinely impactful.
The Gulf states are pursuing ambitious national health strategies focused on prevention, early intervention and precision medicine. Where do rare diseases like NMOSD fit within this broader vision, and what more is needed to bring them into the spotlight?
Rare diseases are by their very nature uncommon, but their collective impact is significant. And, while they are not often preventable, earlier detection and getting people suitable care as soon as possible can make a huge difference to both quality and length of life. So, investment in rare diseases, including NMOSD, very much ties in with the focus of national health strategies in the region.
That is why it is not surprising to see the Gulf states and other countries in the region, like Saudi Arabia and Egypt, increasingly becoming global leaders in rare disease, by both investing in infrastructure and innovation at the national level and championing the issue at the global level.
As someone leading a geographically diverse region, Middle East, Africa and Turkey, what unique challenges do you see in harmonising standards of care for rare diseases, and where does the Gulf stand in comparison?
I see one of the biggest challenges across the Middle East, Africa and Turkey as the very different starting points between countries. In some settings, patients are referred to strong specialist centres where MRI and neurology expertise are available, and rare disease registries are beginning to grow. In others, particularly outside major cities, even getting a timely scan or specialist opinion can be difficult, and reimbursement or regulatory pathways for rare disease treatments are still developing. This means that two patients with the same condition can have very different journeys, even when their clinicians are equally committed.
Harmonising standards of care starts with agreeing on what good care looks like and then helping each health system move towards that in a way that fits its reality. Regional bodies such as MENACTRIMS already play an important role by providing shared clinical guidelines, registries and educational platforms for clinicians. From my perspective, Gulf countries are well placed to pilot new models in rare disease diagnosis and care, and to share those lessons with colleagues in neighbouring countries through training, mentorship and joint research.
The ultimate goal is to close the gap in care for people living with NMOSD, no matter where they live – whether in Baghdad, Nairobi or Tunis. We want a clearer, more reliable path to diagnosis and treatment informed by what we have learned in places such as Dubai and Riyadh.
Read: AstraZeneca’s Iskra Reic on advancing health equity, tackling NCDs across MEA
