The Middle East could be at the forefront of a global health revolution that dramatically improves society's chances of fighting rare diseases, a senior pharmaceutical executive told The National.
Dr Soraya Bekkali, MD, Senior Vice President and Head of EUCAN and International Business at Alexion, AstraZeneca Rare Disease, said the UAE is making great strides through large-scale genomic programmes and the creation of a national rare disease reference centre.
While noting that the Emirates' small population gives the country an advantage in rolling out targeted, high-impact initiatives, Dr Bekkali welcomed a growing role in health for the Middle East more broadly, particularly Egypt, which recently co-sponsored a World Health Organisation resolution alongside Spain calling for a global action plan on rare diseases.
“The UAE is making great strides,” she told The National. “You can implement national plans that reach the entire population. The Emirati Genome Programme, for example, is outstanding.”
The UAE has gathered the genetic data of more than 800,000 Emiratis under the nationwide programme to combat disease before it strikes and protect the health of citizens for generations to come. Just last week, a deal was struck meaning this data could one day be used to create personalised medicine based on the specifics of an individual's DNA.
Leading the way
“In countries where consanguinity is common, you see a higher prevalence of some genetic conditions,” she said. “That makes investments in genomic screening even more important.”
Dr Bekkali said one of the most promising developments is population-wide newborn screening using genomic sequencing, which is a project the UAE and other countries in the region are pursuing.
In 2024, the Ministry of Health and Prevention launched the National Newborn Screening Guidelines, to enhance medical examination procedures for babies born in the country.
The screenings, now implemented at all government and private hospitals in the UAE, include blood spot tests, early diagnosis of genetic diseases, metabolic and endocrine disorders, as well as screening for hearing abnormalities, heart defects, and other congenital anomalies.
“If we can identify these conditions before symptoms begin, we can intervene earlier and prevent serious complications or even death,” she said.
Dr Bekkali, who was speaking to The National on the sidelines of Abu Dhabi Global Health Week earlier this month, also noted the progress in gene therapy and gene editing, technologies that could potentially offer lifelong cures for patients with inherited diseases.
“Some treatments already exist,” she said. “There’s a gene therapy that restored sight in people with a rare form of inherited blindness. Another helped babies with spinal muscular atrophy, who would have lost function within two years, to develop normally after a single infusion.”
Some gene therapies are bespoke, tailored to the patient, while others are designed to be used off-the shelf, making them easier to scale and distribute especially as more countries adopt regulatory frameworks to speed up access.
“The science is moving fast,” she said. “We’ve seen what’s possible. The question now is how fast we’re willing to move to make it available.”
A race against time
Looking at the global picture, Dr Bekkali said patients with rare conditions are still waiting far too long for diagnosis and access to care despite the availability of scientific tools to help them.
“What keeps me up at night is the lack of urgency,” she said. “We have the tools. We have the science. There are patients waiting for us. We have to move faster.”
Having worked in rare diseases for more than 20 years, Dr Bekkali said the inequities facing patients with these conditions are among the worst in healthcare.
“In medical school, I remember seeing some of these diseases mentioned as a bullet point at the end of a textbook,” she said. “A physician might never come across one in their whole career. These patients are often invisible in the systems that are supposed to serve them.”
Globally, there are about 10,000 known rare diseases. Fewer than 10 per cent have approved treatments. In Europe, a disease is considered rare if it affects fewer than five in 10,000 people. In the US, the definition is fewer than 200,000 people nationally.
Until recently, developing therapies for such small patient groups was seen as commercially unfeasible. “Fifty years ago, drug companies weren’t investing in this space,” she said. “The development timelines and manufacturing costs were the same as for common diseases but the number of patients was a fraction.”
It wasn’t until strong lobbying efforts by patient advocacy groups that regulatory bodies in the US, Europe and Japan introduced legal frameworks to encourage drug development in this area. These included incentives such as lower fees, extended data exclusivity, and accelerated approval pathways.
Since then, more than 200 rare disease therapies have been approved but thousands more are needed. “Those changes made it possible for pharma companies to invest in rare disease,” Dr Bekkali said. “But we’re nowhere near where we need to be.”
Abu Dhabi Global Health Week – in pictures
Padmaavat
Director: Sanjay Leela Bhansali
Starring: Ranveer Singh, Deepika Padukone, Shahid Kapoor, Jim Sarbh
3.5/5
'The%20Alchemist's%20Euphoria'
%3Cp%3E%3Cstrong%3EArtist%3A%3C%2Fstrong%3E%20Kasabian%3Cbr%3E%3Cstrong%3ELabel%3A%20%3C%2Fstrong%3EColumbia%3Cbr%3E%3Cstrong%3ERating%3A%3C%2Fstrong%3E%203%2F5%3C%2Fp%3E%0A
UAE currency: the story behind the money in your pockets
Europa League group stage draw
Group A: Villarreal, Maccabi Tel Aviv, Astana, Slavia Prague.
Group B: Dynamo Kiev, Young Boys, Partizan Belgrade, Skenderbeu.
Group C: Sporting Braga, Ludogorets, Hoffenheim, Istanbul Basaksehir.
Group D: AC Milan, Austria Vienna , Rijeka, AEK Athens.
Group E: Lyon, Everton, Atalanta, Apollon Limassol.
Group F: FC Copenhagen, Lokomotiv Moscow, Sheriff Tiraspol, FC Zlin.
Group G: Vitoria Plzen, Steaua Bucarest, Hapoel Beer-Sheva, FC Lugano.
Group H: Arsenal, BATE Borisov, Cologne, Red Star Belgrade.
Group I: Salzburg, Marseille, Vitoria Guimaraes, Konyaspor.
Group J: Athletic Bilbao, Hertha Berlin, Zorya Luhansk, Ostersund.
Group K: Lazio, Nice, Zulte Waregem, Vitesse Arnhem.
Group L: Zenit St Petersburg, Real Sociedad, Rosenborg, Vardar
Jetour T1 specs
Engine: 2-litre turbocharged
Power: 254hp
Torque: 390Nm
Price: From Dh126,000
Available: Now
ENGLAND TEAM
England (15-1)
George Furbank; Jonny May, Manu Tuilagi, Owen Farrell (capt), Elliot Daly; George Ford, Ben Youngs; Tom Curry, Sam Underhill, Courtney Lawes; Charlie Ewels, Maro Itoje; Kyle Sinckler, Jamie George, Joe Marler
Replacements: Luke Cowan-Dickie, Ellis Genge, Will Stuart, George Kruis, Lewis Ludlam, Willi Heinz, Ollie Devoto, Jonathan Joseph
Engine: 80 kWh four-wheel-drive
Transmission: eight-speed automatic
Power: 402bhp
Torque: 760Nm
Price: From Dh280,000
Killing of Qassem Suleimani
KILLING OF QASSEM SULEIMANI
No_One Ever Really Dies
N*E*R*D
(I Am Other/Columbia)
Company%C2%A0profile
%3Cp%3E%3Cstrong%3ECompany%20name%3A%20%3C%2Fstrong%3ETuhoon%0D%3Cbr%3E%3Cstrong%3EYear%20started%3A%20%3C%2Fstrong%3EJune%202021%0D%3Cbr%3E%3Cstrong%3ECo-founders%3A%20%3C%2Fstrong%3EFares%20Ghandour%2C%20Dr%20Naif%20Almutawa%2C%20Aymane%20Sennoussi%0D%3Cbr%3E%3Cstrong%3EBased%3A%20%3C%2Fstrong%3ERiyadh%0D%3Cbr%3E%3Cstrong%3ESector%3A%20%3C%2Fstrong%3Ehealth%20care%0D%3Cbr%3E%3Cstrong%3ESize%3A%20%3C%2Fstrong%3E15%20employees%2C%20%24250%2C000%20in%20revenue%0D%3Cbr%3EI%3Cstrong%3Envestment%20stage%3A%20s%3C%2Fstrong%3Eeed%0D%3Cbr%3E%3Cstrong%3EInvestors%3A%20%3C%2Fstrong%3EWamda%20Capital%2C%20Nuwa%20Capital%2C%20angel%20investors%3C%2Fp%3E%0A
Killing of Qassem Suleimani
Freezer tips
- Always make sure food is completely cool before freezing.
- If you’re cooking in large batches, divide into either family-sized or individual portions to freeze.
- Ensure the food is well wrapped in foil or cling film. Even better, store in fully sealable, labelled containers or zip-lock freezer bags.
- The easiest and safest way to defrost items such as the stews and sauces mentioned is to do so in the fridge for several hours or overnight.
Sheer grandeur
The Owo building is 14 storeys high, seven of which are below ground, with the 30,000 square feet of amenities located subterranean, including a 16-seat private cinema, seven lounges, a gym, games room, treatment suites and bicycle storage.
A clear distinction between the residences and the Raffles hotel with the amenities operated separately.
T20 World Cup Qualifier A, Muscat
Friday, February 18: 10am - Oman v Nepal, Canada v Philippines; 2pm - Ireland v UAE, Germany v Bahrain
Saturday, February 19: 10am - Oman v Canada, Nepal v Philippines; 2pm - UAE v Germany, Ireland v Bahrain
Monday, February 21: 10am - Ireland v Germany, UAE v Bahrain; 2pm - Nepal v Canada, Oman v Philippines
Tuesday, February 22: 2pm – semi-finals
Thursday, February 24: 2pm – final
UAE squad: Ahmed Raza (captain), Muhammad Waseem, Chirag Suri, Vriitya Aravind, Rohan Mustafa, Kashif Daud, Zahoor Khan, Alishan Sharafu, Raja Akifullah, Karthik Meiyappan, Junaid Siddique, Basil Hameed, Zafar Farid, Mohammed Boota, Mohammed Usman, Rahul Bhatia
All matches to be streamed live on icc.tv
THE%20SPECS
%3Cp%3EEngine%3A%204.4-litre%20twin-turbo%20V8%20hybrid%0D%3Cbr%3EPower%3A%20653hp%20at%205%2C400rpm%0D%3Cbr%3ETorque%3A%20800Nm%20at%201%2C600-5%2C000rpm%0D%3Cbr%3ETransmission%3A%208-speed%20auto%0D%3Cbr%3E0-100kph%20in%204.3sec%0D%3Cbr%3ETop%20speed%20250kph%0D%3Cbr%3EFuel%20consumption%3A%20NA%0D%3Cbr%3EOn%20sale%3A%20Q2%202023%0D%3Cbr%3EPrice%3A%20From%20Dh750%2C000%0D%3Cbr%3E%3C%2Fp%3E%0A
Specs
Engine: Duel electric motors
Power: 659hp
Torque: 1075Nm
On sale: Available for pre-order now
Price: On request
More from Rashmee Roshan Lall
Key figures in the life of the fort
Sheikh Dhiyab bin Isa (ruled 1761-1793) Built Qasr Al Hosn as a watchtower to guard over the only freshwater well on Abu Dhabi island.
Sheikh Shakhbut bin Dhiyab (ruled 1793-1816) Expanded the tower into a small fort and transferred his ruling place of residence from Liwa Oasis to the fort on the island.
Sheikh Tahnoon bin Shakhbut (ruled 1818-1833) Expanded Qasr Al Hosn further as Abu Dhabi grew from a small village of palm huts to a town of more than 5,000 inhabitants.
Sheikh Khalifa bin Shakhbut (ruled 1833-1845) Repaired and fortified the fort.
Sheikh Saeed bin Tahnoon (ruled 1845-1855) Turned Qasr Al Hosn into a strong two-storied structure.
Sheikh Zayed bin Khalifa (ruled 1855-1909) Expanded Qasr Al Hosn further to reflect the emirate's increasing prominence.
Sheikh Shakhbut bin Sultan (ruled 1928-1966) Renovated and enlarged Qasr Al Hosn, adding a decorative arch and two new villas.
Sheikh Zayed bin Sultan (ruled 1966-2004) Moved the royal residence to Al Manhal palace and kept his diwan at Qasr Al Hosn.
Sources: Jayanti Maitra, www.adach.ae
Harry%20%26%20Meghan
%3Cp%3E%3Cstrong%3EDirector%3A%20%3C%2Fstrong%3ELiz%20Garbus%26nbsp%3B%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EStars%3A%3C%2Fstrong%3E%20Duke%20and%20Duchess%20of%20Sussex%0D%3Cbr%3E%0D%3Cbr%3E%3Cstrong%3ERating%3A%20%3C%2Fstrong%3E3%2F5%3C%2Fp%3E%0A
F1 The Movie
Starring: Brad Pitt, Damson Idris, Kerry Condon, Javier Bardem
Director: Joseph Kosinski
Rating: 4/5
The%20Iron%20Claw
%3Cp%3E%3Cstrong%3EDirector%3A%3C%2Fstrong%3E%20Sean%20Durkin%C2%A0%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3EStarring%3A%3C%2Fstrong%3E%20Zac%20Efron%2C%20Jeremy%20Allen%20White%2C%20Harris%20Dickinson%2C%20Maura%20Tierney%2C%20Holt%20McCallany%2C%20Lily%20James%3C%2Fp%3E%0A%3Cp%3E%3Cstrong%3ERating%3A%3C%2Fstrong%3E%204%2F5%3C%2Fp%3E%0A
The biog
Prefers vegetables and fish to meat and would choose salad over pizza
Walks daily as part of regular exercise routine
France is her favourite country to visit
Has written books and manuals on women’s education, first aid and health for the family
Family: Husband, three sons and a daughter
Fathiya Nadhari's instructions to her children was to give back to the country
The children worked as young volunteers in social, education and health campaigns
Her motto is to never stop working for the country
The specs
- Engine: 3.9-litre twin-turbo V8
- Power: 640hp
- Torque: 760nm
- On sale: 2026
- Price: Not announced yet
UAE currency: the story behind the money in your pockets
SPECS
%3Cp%3E%3Cstrong%3EEngine%3C%2Fstrong%3E%3A%202-litre%20direct%20injection%20turbo%20%0D%3Cbr%3E%3Cstrong%3ETransmission%3C%2Fstrong%3E%3A%207-speed%20automatic%20%0D%3Cbr%3E%3Cstrong%3EPower%3C%2Fstrong%3E%3A%20261hp%20%0D%3Cbr%3E%3Cstrong%3ETorque%3C%2Fstrong%3E%3A%20400Nm%20%0D%3Cbr%3E%3Cstrong%3EPrice%3C%2Fstrong%3E%3A%20From%20Dh134%2C999%26nbsp%3B%3C%2Fp%3E%0A
Defence review at a glance
• Increase defence spending to 2.5% of GDP by 2027 but given “turbulent times it may be necessary to go faster”
• Prioritise a shift towards working with AI and autonomous systems
• Invest in the resilience of military space systems.
• Number of active reserves should be increased by 20%
• More F-35 fighter jets required in the next decade
• New “hybrid Navy” with AUKUS submarines and autonomous vessels
COMPANY%20PROFILE%20
%3Cp%3E%3Cstrong%3EName%3A%3C%2Fstrong%3E%20Dooda%20Solutions%0D%3Cbr%3E%3Cstrong%3EBased%3A%3C%2Fstrong%3E%20Lebanon%0D%3Cbr%3E%3Cstrong%3EFounder%3A%20%3C%2Fstrong%3ENada%20Ghanem%0D%3Cbr%3E%3Cstrong%3ESector%3A%3C%2Fstrong%3E%20AgriTech%0D%3Cbr%3E%3Cstrong%3ETotal%20funding%3A%20%3C%2Fstrong%3E%24300%2C000%20in%20equity-free%20funding%0D%3Cbr%3E%3Cstrong%3ENumber%20of%20employees%3A%3C%2Fstrong%3E%2011%3C%2Fp%3E%0A
Kanye%20West
%3Cp%3EYe%20%E2%80%94%20the%20rapper%20formerly%20known%20as%20Kanye%20West%20%E2%80%94%20has%20seen%20his%20net%20worth%20fall%20to%20%24400%20million%20in%20recent%20weeks.%20That%E2%80%99s%20a%20precipitous%20drop%20from%20Bloomberg%E2%80%99s%20estimates%20of%20%246.8%20billion%20at%20the%20end%20of%202021.%3Cbr%3EYe%E2%80%99s%20wealth%20plunged%20after%20business%20partners%2C%20including%20Adidas%2C%20severed%20ties%20with%20him%20on%20the%20back%20of%20anti-Semitic%20remarks%20earlier%20this%20year.%3Cbr%3EWest%E2%80%99s%20present%20net%20worth%20derives%20from%20cash%2C%20his%20music%2C%20real%20estate%20and%20a%20stake%20in%20former%20wife%20Kim%20Kardashian%E2%80%99s%20shapewear%20firm%2C%20Skims.%3C%2Fp%3E%0A
UAE currency: the story behind the money in your pockets
WHAT IS GRAPHENE?
It was discovered in 2004, when Russian-born Manchester scientists Andrei Geim and Kostya Novoselov were experimenting with sticky tape and graphite, the material used as lead in pencils.
Placing the tape on the graphite and peeling it, they managed to rip off thin flakes of carbon. In the beginning they got flakes consisting of many layers of graphene. But when they repeated the process many times, the flakes got thinner.
By separating the graphite fragments repeatedly, they managed to create flakes that were just one atom thick. Their experiment led to graphene being isolated for the very first time.
In 2010, Geim and Novoselov were awarded the Nobel Prize for Physics.
FULL%20FIGHT%20CARD
%3Cp%3EFeatherweight%20Bout%3A%0D%20Abdullah%20Al%20Qahtani%20v%20Taha%20Bendaoud%0D%3Cbr%3EBantamweight%20Bout%3A%0D%20Ali%20Taleb%20v%20Nawras%20Abzakh%0D%3Cbr%3EBantamweight%20Bout%3A%0D%20Xavier%20Alaoui%20v%20Rachid%20El%20Hazoume%0D%3Cbr%3EFeatherweight%20Bout%3A%0D%20Islam%20Reda%20v%20Adam%20Meskini%0D%3Cbr%3EBantamweight%20Bout%3A%0D%20Tariq%20Ismail%20v%20Jalal%20Al%20Daaja%0D%3Cbr%3EBantamweight%20Bout%3A%0D%20Elias%20Boudegzdame%20v%20Hassan%20Mandour%0D%3Cbr%3EAmateur%20Female%20Atomweight%20Bout%3A%0D%20Hattan%20Al%20Saif%20v%20Nada%20Faheem%0D%3Cbr%3EFeatherweight%20Bout%3A%0D%20Maraoune%20Bellagouit%20v%20Motaz%20Askar%0D%3Cbr%3EFeatherweight%20Bout%3A%0D%20Ahmed%20Tarek%20v%20Abdelrahman%20Alhyasat%0D%3Cbr%3EShowcase%20Featherweight%20Bout%3A%0D%20Mido%20Mohamed%20v%20Yazeed%20Hasanain%0D%3Cbr%3EShowcase%20Flyweight%20Bout%3A%0D%20Malik%20Basahel%20v%20Harsh%20Pandya%0D%3C%2Fp%3E%0A
Key facilities
- Olympic-size swimming pool with a split bulkhead for multi-use configurations, including water polo and 50m/25m training lanes
- Premier League-standard football pitch
- 400m Olympic running track
- NBA-spec basketball court with auditorium
- 600-seat auditorium
- Spaces for historical and cultural exploration
- An elevated football field that doubles as a helipad
- Specialist robotics and science laboratories
- AR and VR-enabled learning centres
- Disruption Lab and Research Centre for developing entrepreneurial skills
Fitness problems in men's tennis
Andy Murray - hip
Novak Djokovic - elbow
Roger Federer - back
Stan Wawrinka - knee
Kei Nishikori - wrist
Marin Cilic - adductor
