Bashir Ahmed Shahzad, aged 17, receives a blood transfusion for thalassaemia at the Dubai Thalassaemia Centre.
Bashir Ahmed Shahzad, aged 17, receives a blood transfusion for thalassaemia at the Dubai Thalassaemia Centre.

Genetic disease clinic asks for help



DUBAI // The UAE's only centre specialising in treating thalassaemia patients is calling for more and better screening to reduce the incidence of the genetic disease. Staff at the Dubai Thalassaemia Centre, which operates at 95 to 100 per cent of capacity, also want to create a satellite network of smaller units to help handle some of the more than 800 patients it sees each year.

Thalassaemia is an inherited disorder in which the body produces less haemoglobin than normal. Haemoglobin allows the red blood cells to carry oxygen around the body. If the levels are low it can cause anaemia, which leads to tiredness and fatigue. According to Dr Khawla Belhoul, director of the centre, from four to eight per cent of the UAE population are carriers of the thalassaemia gene. If two carriers have a child there is a 25 per cent chance the child will have thalassaemia, and a 50 per cent chance the child will be a carrier.

"The major thing about thalassaemia is prevention," she said. "It is the most common [genetic disease] but the easiest to prevent. Prevention is awareness and tests. It is a national problem." The centre, which opened in 1989 and is in the grounds of Al Wasl Hospital, is Government-funded and treats its patients for free. It does, however, raise additional money from private sources. Donations pay for a sanctuary for youngsters and adults. It boasts PlayStation consoles, computers, televisions, newspapers and toys - in other words, something for everyone.

Volunteers spend time with the adults and children making art and craft pieces that are displayed in the centre, and schools send their students to learn about thalassaemia and to meet some of the patients. It can cost up to Dh100,000 (US$27,000) to treat one thalassaemia patient for a year, according to Dr Essam Dohair, the centre's outreach co-ordinator and a genetics expert. "Many patients could not afford private treatment," he said. "It is usually a minimum of Dh2,500 for each visit."

The centre treats 428 patients who require regular blood transfusions and another 300 who require monitoring and regular check-ups. More than 95 per cent of the patients come from the UAE; the others travel from other Gulf countries or further afield. Dr Belhoul said she would like to develop satellite units and outpatient centres across the UAE to provide more assistance. "What I have already suggested is to create a satellite that reports back to here, and then we can transfer the know-how to these satellites," she said. "Then in the future these may grow to become equivalents to this centre."

A high proportion of the expatriate population in the UAE comes from high-risk areas such as South Asia, the Mediterranean and the Middle East, Dr Belhoul said. Patients with thalassaemia can lead relatively normal lives with the right treatment and proper management of the disease. It is an autosomal recessive blood disorder, which means patients need a blood transfusion every three to four weeks throughout their life.

A patient receives about three units of blood for each transfusion and has to take daily medication. If the disease is not managed it can cause bone deformities, an increased risk of infections, slowed growth, and liver and heart problems. It also can affect hormone production. A bone-marrow transplant with an exact match is the only cure, and a costly one. The UAE introduced mandatory premarital screening in 2006. The law does not stipulate how soon couples should be screened before their wedding.

Dr Belhoul said the number of new cases each year among the local population has been steadily declining as a result of the screenings. Although premarital screenings are helping, she said, the process is still not perfect. "People do not get premarital screening early; that's what I don't like about it. It is not always easy to change your mind [about marriage]. After committing, it is difficult."

Despite the common assumption that the disease is caused by familial marriages, this is not strictly true, Dr Belhoul said, adding that the disease can be found in a band of countries from Spain to south Asia, and marriage between people from anywhere in that region could bring a thalassaemia risk. A two-stage screening process would work much better, she said. By introducing testing much earlier people could be counselled about the choices they make.

An important part of the centre's work is providing non-medical support such as career-placement and psychological counselling. Some of the younger patients at the centre said they often experience feelings of loneliness and isolation, and also struggle to fit in. Linette Saldanha, a nurse, said that strong bonds are built between the patients and the staff, as many of them have been getting treatment at the centre from infancy.

"These are not patients for us," she said. "We work like a family. In many ways we go beyond our limitations." @Email:kshaheen@thenational.ae munderwood@thenational.ae

Malcolm & Marie

Directed by: Sam Levinson

Starring: John David Washington and Zendaya

Three stars

Gender equality in the workplace still 200 years away

It will take centuries to achieve gender parity in workplaces around the globe, according to a December report from the World Economic Forum.

The WEF study said there had been some improvements in wage equality in 2018 compared to 2017, when the global gender gap widened for the first time in a decade.

But it warned that these were offset by declining representation of women in politics, coupled with greater inequality in their access to health and education.

At current rates, the global gender gap across a range of areas will not close for another 108 years, while it is expected to take 202 years to close the workplace gap, WEF found.

The Geneva-based organisation's annual report tracked disparities between the sexes in 149 countries across four areas: education, health, economic opportunity and political empowerment.

After years of advances in education, health and political representation, women registered setbacks in all three areas this year, WEF said.

Only in the area of economic opportunity did the gender gap narrow somewhat, although there is not much to celebrate, with the global wage gap narrowing to nearly 51 per cent.

And the number of women in leadership roles has risen to 34 per cent globally, WEF said.

At the same time, the report showed there are now proportionately fewer women than men participating in the workforce, suggesting that automation is having a disproportionate impact on jobs traditionally performed by women.

And women are significantly under-represented in growing areas of employment that require science, technology, engineering and mathematics skills, WEF said.

* Agence France Presse

COMPANY%20PROFILE
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How to protect yourself when air quality drops

Install an air filter in your home.

Close your windows and turn on the AC.

Shower or bath after being outside.

Wear a face mask.

Stay indoors when conditions are particularly poor.

If driving, turn your engine off when stationary.

Other workplace saving schemes
  • The UAE government announced a retirement savings plan for private and free zone sector employees in 2023.
  • Dubai’s savings retirement scheme for foreign employees working in the emirate’s government and public sector came into effect in 2022.
  • National Bonds unveiled a Golden Pension Scheme in 2022 to help private-sector foreign employees with their financial planning.
  • In April 2021, Hayah Insurance unveiled a workplace savings plan to help UAE employees save for their retirement.
  • Lunate, an Abu Dhabi-based investment manager, has launched a fund that will allow UAE private companies to offer employees investment returns on end-of-service benefits.
FIXTURES

All kick-off times UAE ( 4 GMT)

Friday
Sevilla v Levante (midnight)

Saturday
Athletic Bilbao v Real Sociedad (7.15pm)
Eibar v Valencia (9.30pm)
Atletico Madrid v Alaves (11.45pm)

Sunday
Girona v Getafe (3pm)
Celta Vigo v Villarreal (7.15pm)
Las Palmas v Espanyol (9.30pm)
Barcelona v Deportivo la Coruna (11.45pm)

Monday
Malaga v Real Betis (midnight)

MATCH INFO

Champions League quarter-final, first leg

Tottenham Hotspur v Manchester City, Tuesday, 11pm (UAE)

Matches can be watched on BeIN Sports

BLACKBERRY
%3Cp%3EDirector%3A%20Matt%20Johnson%3C%2Fp%3E%0A%3Cp%3EStars%3A%20Jay%20Baruchel%2C%20Glenn%20Howerton%2C%20Matt%20Johnson%3C%2Fp%3E%0A%3Cp%3ERating%3A%204%2F5%3C%2Fp%3E%0A
THE SPECS

      

 

Engine: 1.5-litre

 

Transmission: 6-speed automatic

 

Power: 110 horsepower 

 

Torque: 147Nm 

 

Price: From Dh59,700 

 

On sale: now  

 
COMPANY%20PROFILE%20
%3Cp%3E%3Cstrong%3ECompany%20name%3A%20%3C%2Fstrong%3EAlmouneer%3Cbr%3E%3Cstrong%3EStarted%3A%3C%2Fstrong%3E%202017%3Cbr%3E%3Cstrong%3EFounders%3A%3C%2Fstrong%3E%20Dr%20Noha%20Khater%20and%20Rania%20Kadry%3Cbr%3E%3Cstrong%3EBased%3A%20%3C%2Fstrong%3EEgypt%3Cbr%3E%3Cstrong%3ENumber%20of%20staff%3A%20%3C%2Fstrong%3E120%3Cbr%3E%3Cstrong%3EInvestment%3A%20%3C%2Fstrong%3EBootstrapped%2C%20with%20support%20from%20Insead%20and%20Egyptian%20government%2C%20seed%20round%20of%20%3Cbr%3E%243.6%20million%20led%20by%20Global%20Ventures%3Cbr%3E%3C%2Fp%3E%0A
Dubai Bling season three

Cast: Loujain Adada, Zeina Khoury, Farhana Bodi, Ebraheem Al Samadi, Mona Kattan, and couples Safa & Fahad Siddiqui and DJ Bliss & Danya Mohammed 

Rating: 1/5

COMPANY%20PROFILE
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Paatal Lok season two

Directors: Avinash Arun, Prosit Roy 

Stars: Jaideep Ahlawat, Ishwak Singh, Lc Sekhose, Merenla Imsong

Rating: 4.5/5

Cryopreservation: A timeline
  1. Keyhole surgery under general anaesthetic
  2. Ovarian tissue surgically removed
  3. Tissue processed in a high-tech facility
  4. Tissue re-implanted at a time of the patient’s choosing
  5. Full hormone production regained within 4-6 months
How to avoid crypto fraud
  • Use unique usernames and passwords while enabling multi-factor authentication.
  • Use an offline private key, a physical device that requires manual activation, whenever you access your wallet.
  • Avoid suspicious social media ads promoting fraudulent schemes.
  • Only invest in crypto projects that you fully understand.
  • Critically assess whether a project’s promises or returns seem too good to be true.
  • Only use reputable platforms that have a track record of strong regulatory compliance.
  • Store funds in hardware wallets as opposed to online exchanges.
MO
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Bridgerton%20season%20three%20-%20part%20one
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COMPANY PROFILE
Name: ARDH Collective
Based: Dubai
Founders: Alhaan Ahmed, Alyina Ahmed and Maximo Tettamanzi
Sector: Sustainability
Total funding: Self funded
Number of employees: 4
Vidaamuyarchi

Director: Magizh Thirumeni

Stars: Ajith Kumar, Arjun Sarja, Trisha Krishnan, Regina Cassandra

Rating: 4/5

 

FFP EXPLAINED

What is Financial Fair Play?
Introduced in 2011 by Uefa, European football’s governing body, it demands that clubs live within their means. Chiefly, spend within their income and not make substantial losses.

What the rules dictate? 
The second phase of its implementation limits losses to €30 million (Dh136m) over three seasons. Extra expenditure is permitted for investment in sustainable areas (youth academies, stadium development, etc). Money provided by owners is not viewed as income. Revenue from “related parties” to those owners is assessed by Uefa's “financial control body” to be sure it is a fair value, or in line with market prices.

What are the penalties? 
There are a number of punishments, including fines, a loss of prize money or having to reduce squad size for European competition – as happened to PSG in 2014. There is even the threat of a competition ban, which could in theory lead to PSG’s suspension from the Uefa Champions League.

The bio

Date of Birth: April 25, 1993
Place of Birth: Dubai, UAE
Marital Status: Single
School: Al Sufouh in Jumeirah, Dubai
University: Emirates Airline National Cadet Programme and Hamdan University
Job Title: Pilot, First Officer
Number of hours flying in a Boeing 777: 1,200
Number of flights: Approximately 300
Hobbies: Exercising
Nicest destination: Milan, New Zealand, Seattle for shopping
Least nice destination: Kabul, but someone has to do it. It’s not scary but at least you can tick the box that you’ve been
Favourite place to visit: Dubai, there’s no place like home

The%20specs%20
%3Cp%3E%3Cstrong%3EEngine%3A%20%3C%2Fstrong%3E2.0-litre%204cyl%20turbo%0D%3Cbr%3E%3Cstrong%3EPower%3A%20%3C%2Fstrong%3E261hp%20at%205%2C500rpm%0D%3Cbr%3E%3Cstrong%3ETorque%3A%20%3C%2Fstrong%3E400Nm%20at%201%2C750-4%2C000rpm%0D%3Cbr%3E%3Cstrong%3ETransmission%3A%20%3C%2Fstrong%3E7-speed%20dual-clutch%20auto%0D%3Cbr%3E%3Cstrong%3EFuel%20consumption%3A%20%3C%2Fstrong%3E10.5L%2F100km%0D%3Cbr%3E%3Cstrong%3EOn%20sale%3A%20%3C%2Fstrong%3ENow%0D%3Cbr%3E%3Cstrong%3EPrice%3A%20%3C%2Fstrong%3EFrom%20Dh129%2C999%20(VX%20Luxury)%3B%20from%20Dh149%2C999%20(VX%20Black%20Gold)%3C%2Fp%3E%0A
The specs: 2019 Cadillac XT4

Price, base: Dh145,000

Engine: 2.0-litre turbocharged in-line four-cylinder engine

Transmission: Nine-speed automatic

Power: 237hp @ 5,000rpm

Torque: 350Nm @ 1,500rpm

Fuel economy, combined: 8.7L / 100km

Living in...

This article is part of a guide on where to live in the UAE. Our reporters will profile some of the country’s most desirable districts, provide an estimate of rental prices and introduce you to some of the residents who call each area home.

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The specs

Engine: 1.5-litre, 4-cylinder turbo

Transmission: CVT

Power: 170bhp

Torque: 220Nm

Price: Dh98,900

UPI facts

More than 2.2 million Indian tourists arrived in UAE in 2023
More than 3.5 million Indians reside in UAE
Indian tourists can make purchases in UAE using rupee accounts in India through QR-code-based UPI real-time payment systems
Indian residents in UAE can use their non-resident NRO and NRE accounts held in Indian banks linked to a UAE mobile number for UPI transactions

The Perfect Couple

Starring: Nicole Kidman, Liev Schreiber, Jack Reynor

Creator: Jenna Lamia

Rating: 3/5

The Sand Castle

Director: Matty Brown

Stars: Nadine Labaki, Ziad Bakri, Zain Al Rafeea, Riman Al Rafeea

Rating: 2.5/5

German intelligence warnings
  • 2002: "Hezbollah supporters feared becoming a target of security services because of the effects of [9/11] ... discussions on Hezbollah policy moved from mosques into smaller circles in private homes." Supporters in Germany: 800
  • 2013: "Financial and logistical support from Germany for Hezbollah in Lebanon supports the armed struggle against Israel ... Hezbollah supporters in Germany hold back from actions that would gain publicity." Supporters in Germany: 950
  • 2023: "It must be reckoned with that Hezbollah will continue to plan terrorist actions outside the Middle East against Israel or Israeli interests." Supporters in Germany: 1,250 

Source: Federal Office for the Protection of the Constitution

A Bad Moms Christmas
Dir: John Lucas and Scott Moore
Starring: Mila Kunis, Kathryn Hahn, Kristen Bell, Susan Sarandon, Christine Baranski, Cheryl Hines
Two stars

Game Changer

Director: Shankar 

Stars: Ram Charan, Kiara Advani, Anjali, S J Suryah, Jayaram

Rating: 2/5

Tonight's Chat on The National

Tonight's Chat is a series of online conversations on The National. The series features a diverse range of celebrities, politicians and business leaders from around the Arab world.

Tonight’s Chat host Ricardo Karam is a renowned author and broadcaster who has previously interviewed Bill Gates, Carlos Ghosn, Andre Agassi and the late Zaha Hadid, among others.

Intellectually curious and thought-provoking, Tonight’s Chat moves the conversation forward.

Facebook | Our website | Instagram

Guide to intelligent investing
Investing success often hinges on discipline and perspective. As markets fluctuate, remember these guiding principles:
  • Stay invested: Time in the market, not timing the market, is critical to long-term gains.
  • Rational thinking: Breathe and avoid emotional decision-making; let logic and planning guide your actions.
  • Strategic patience: Understand why you’re investing and allow time for your strategies to unfold.
 
 

Mercer, the investment consulting arm of US services company Marsh & McLennan, expects its wealth division to at least double its assets under management (AUM) in the Middle East as wealth in the region continues to grow despite economic headwinds, a company official said.

Mercer Wealth, which globally has $160 billion in AUM, plans to boost its AUM in the region to $2-$3bn in the next 2-3 years from the present $1bn, said Yasir AbuShaban, a Dubai-based principal with Mercer Wealth.

Within the next two to three years, we are looking at reaching $2 to $3 billion as a conservative estimate and we do see an opportunity to do so,” said Mr AbuShaban.

Mercer does not directly make investments, but allocates clients’ money they have discretion to, to professional asset managers. They also provide advice to clients.

“We have buying power. We can negotiate on their (client’s) behalf with asset managers to provide them lower fees than they otherwise would have to get on their own,” he added.

Mercer Wealth’s clients include sovereign wealth funds, family offices, and insurance companies among others.

From its office in Dubai, Mercer also looks after Africa, India and Turkey, where they also see opportunity for growth.

Wealth creation in Middle East and Africa (MEA) grew 8.5 per cent to $8.1 trillion last year from $7.5tn in 2015, higher than last year’s global average of 6 per cent and the second-highest growth in a region after Asia-Pacific which grew 9.9 per cent, according to consultancy Boston Consulting Group (BCG). In the region, where wealth grew just 1.9 per cent in 2015 compared with 2014, a pickup in oil prices has helped in wealth generation.

BCG is forecasting MEA wealth will rise to $12tn by 2021, growing at an annual average of 8 per cent.

Drivers of wealth generation in the region will be split evenly between new wealth creation and growth of performance of existing assets, according to BCG.

Another general trend in the region is clients’ looking for a comprehensive approach to investing, according to Mr AbuShaban.

“Institutional investors or some of the families are seeing a slowdown in the available capital they have to invest and in that sense they are looking at optimizing the way they manage their portfolios and making sure they are not investing haphazardly and different parts of their investment are working together,” said Mr AbuShaban.

Some clients also have a higher appetite for risk, given the low interest-rate environment that does not provide enough yield for some institutional investors. These clients are keen to invest in illiquid assets, such as private equity and infrastructure.

“What we have seen is a desire for higher returns in what has been a low-return environment specifically in various fixed income or bonds,” he said.

“In this environment, we have seen a de facto increase in the risk that clients are taking in things like illiquid investments, private equity investments, infrastructure and private debt, those kind of investments were higher illiquidity results in incrementally higher returns.”

The Abu Dhabi Investment Authority, one of the largest sovereign wealth funds, said in its 2016 report that has gradually increased its exposure in direct private equity and private credit transactions, mainly in Asian markets and especially in China and India. The authority’s private equity department focused on structured equities owing to “their defensive characteristics.”