Thalassemia a Major Public Health Issue in UAE, Says Expert

Courtesy by: khaleejtimes.com

DUBAI — Thalassemia is a major public health issue in the UAE, which affects so many families at social, medical and psychological levels, says Dr Erol Baysal, head of Molecular Genetics Unit at the Genetic and Thalassemia Centre 
in Dubai.

One in 12 persons in the UAE is said to be thalassemia carrier. And the centre is the only facility in the country that conducts highly specialised tests to detect traits of thalassemia and offer counselling services to patients and their physicians to deal with the emerging results of the tests.

A total of 10,000 people have undergone premarital tests at the centre since the launch of the service in 2005.

When the UAE government made premarital tests mandatory for legalisation of marriages in the country in 2006, health officials said the main aim of the legislation was to protect the country from having children with different types of hereditary diseases, especially thalassemia which has a high prevalence among UAE nationals due to consanguineous marriages.

Dr Baysal feels the numbers of tests carried out are not to be underestimated. “The premarital screening programme is the most important part of our preventive campaign against thalassemia and these tests entail couples, most of whom are young nationals planning to get married,” he said.

“You cannot have a successful preventive programme without prenatal diagnosis which is the new approach to identify the genetic makeup of a foetus and its chances of being a thalassemia carrier or patient.”

As in the case of every autosomal disease, there is a 25 per cent chance for the child of thalassemia carrier parents to become affected. Another 50 per cent of them could be carriers and the rest could be unaffected, normal children.

This principle has been largely found to be correct in the number of cases diagnosed through prenatal tests, as 28 positive cases have been detected in the 115 cases, said Dr Mahmoud Taleb Al Ali, director of the Genetic Centre.

“The benefit of the test lies not only in early detection of the disease in 25 per cent of cases and helping to initiate early treatment,” said Dr Al Ali.

“It also helps 75 per cent of mothers to have social and financial relief by knowing that they will not have an affected child. Once the test is done, those women do not have to basically suffer for nine months thinking that their babies would be affected. That trauma can also be avoided,” he pointed out.

“If the genetic finding tells us that the baby may not require blood transfusion, you are also saving a life from blood transfusion and related complications,” noted Dr Baysal.

Three specialised labs at the centre – one for DNA analysis, another for cytogenetic tests and the third for analysing patients according to their metabolic features – are run by highly trained experts who conduct genetic tests by examining the sub-atomic levels of genes that cause hereditary diseases.

The genotype analysis, which finds out the genetic mutation that causes a disorder and its physical manifestation among patients, helps in determining the specific type of mutations for different types of thalassemia.

Dr Al Ali said the centre is the only facility in the GCC that carries out prenatal genetic test. “We also have the unique distinction of delivering test results on the same day. There are a very few labs in the world which release reports in 24 hours.”

He said the lab results and genetic information passed on to the treating physicians help the latter take a better and speedy decision regarding patient’s treatment.

The doctors said the government could save millions of dirhams by conducting the prenatal tests locally.

“One will have to spend at least Dh100,000 for getting this test done abroad. This can only go high if there are any associated complications. In that case, when you consider the fact that 50 per cent of our patients are UAE nationals, we can say that the government could save at least Dh6 million in two years by offering the service here in Dubai,” said Dr Al Ali.

Dr Baysal said the centre’s goal is to provide the service to every expecting mother who is at risk of delivering a child with thalassemia.

Thalassaemia website ‘will help educate youngsters

Courtesy by: gulfnews.com

A website on the disease was launched on Sunday in a high-profile manner to send the message to a larger number of people.

Dubai Health authorities in the emirate are reaching out to the younger generation in an attempt to stem the growing prevalence of thalassaemia, a deadly blood disorder among UAE residents, doctors said.

A website on the disease was launched on Sunday in a high-profile manner to send the message to a larger number of people. Shaikh Majid Bin Mohammad Bin Rashid Al Maktoum, Chairman of the Dubai Culture, clicked a laptop keyboard key to launch the dedicated website, www.thalassemia-dubai.com

“It will attract teenagers who nowadays are on Facebook (and other social network sites),” said Dr Khawla Bel Houl, director of the Thalassaemia Centre.

The blood disorder affects one in 12 people in the UAE, with Emiratis and Pakistanis, being affected the most, according to the number of patients treated at the Centre.

The director said the authorities are proposing that university students should also be screened, expanding the checks which presently are restricted to couples who are planning marriage.

Dr Khawla said that while there is awareness of the disease among the younger generation, there is barely any compliance (on screening or testing). A thalassaemia test is free for Emiratis and costs about Dh50 for expatriates. The screening takes five minutes and is painless.

Healthcare professionals will benefit from having a localised resource containing international standard information, they can also e-mail for expert advice, she added.

The website will add to the centre’s patient communication system that uses SMS to alert its patients to treatment changes, appointments, and its activities.

“The DHA (Dubai Health Authority) is dedicated to ensure we reduce the prevalence of thalassaemia in our society and we have given high priority to measures such as pre-marital testing,” said Qadi Saeed Al Murooshid, director-general of the Authority.

He said it was important to reach out to the public and provide information on diagnosis and treatment options. “We want the public and health care providers to have a forum to interact and this website provides such an opportunity,” he said.

Dr Khawla said education is the key part of chronic disease management. She said there were lapses earlier in the pre-marital screening, but it is now mandatory in all the emirates.

The Thalassaemia Centre treats 450 patients and is working at full capacity, said the director. She said most of the patients require blood transfusions every two or four weeks.

Disease: What is thalassaemia?

The disease reduces the number of normal blood cells in the body. The lack of red blood cells prevents the normal flow of oxygen around the body. The symptoms are fatigue, weakness, shortness of breath, racing heart and paleness of skin.

For more information on thalassemia, log on to www.thalassemia-dubai.com

Thalassemia Screening for Varsity Admission Mooted

DUBAI – The Thalassemia Centre in Dubai is pushing for legislation to make thalassemia screening programmes compulsory for those seeking admission to universities, a move aimed at tackling the most prevalent genetic disorder in the country.

The UAE’s only specialised centre that offers comprehensive tools for prevention, diagnosis and management of thalassemia has also put forward a suggestion to introduce compulsory community hours for university students to work with its officials and patients so that the former understand the blood disorder better and volunteer for getting screened.

One in 12 people in the UAE carry the gene for thalassemia, a blood disorder that reduces the number of red blood cells in the body.

The government has already made pre-marital tests for couples mandatory to help assess the chance of a couple having a thalassemic child.

Dr Khawla Belhoul, director of the Thalassemia Centre, however, pointed out that pre-marital tests are usually done at a very late stage and many couples do not want to back out from having a marriage even after knowing their carrier status.

“It (pre-marital testing) is not enough. It usually comes too late,” said Dr Belhoul.

“I think everybody should screen their kid. Your kid should know about himself before he gets involved (in a relation). The possibility of one backing out is much higher if he knows the condition before getting engaged or involved in a relation,” she told reporters on the sidelines of the launch of the centre’s websitewww.thalassemiacentre.ae or www.thalassemia-dubai.com on Sunday.

Though the proposals are to mandate thalassemia screening certificate at the time of university admission, Dr Belhoul said universities could at least impose it any time according to their convenience.

“They (students) don’t have to submit whether they are positive or negative or they are carriers. But they should know their status. What matters is that they are tested.”

Pointing out that students doing volunteer social work with the centre could have better knowledge about the disease, she said universities should also introduce community hours to be spent with the centre and its patients.

Since over 80 per cent of the affected patients are teenagers, she said, the centre is trying out modern electronic ways to get across the messages of prevention and early detection to the young generation.

The website that was launched by Shaikh Majid bin Mohammed bin Rashid Al Maktoum, Chairman of Dubai Culture and Arts Authority, is an important step towards this.

The website allows users to interact with each other and to leave comments and suggestions for the centre’s staff.

“When we talk to teenagers, we have to talk in their language. And that is what we are working on now. We are doing a lot on the internet…we are working on facebook and twitter,” said Dr Belhoul.

The Director-General of Dubai Health Authority (DHA), Qadhi Saeed Al Murooshid, who accompanied Shaikh Majid on a tour of the Thalassemia Centre, Dubai Cord Blood Centre and Joslin Diabetes Centre, said the authority was keen on providing easily accessible interactive forums which have information on diseases and their management, as it was crucial to further develop its patient communication systems.

The website will add to the centre’s already well-established patient communication system that uses SMS to alert its patients to treatment changes, appointments and the centre’s activities.

Majid bin Mohammed launches latest Thalassemia website

Courtesy by: ameinfo.com

His Highness Sheikh Majid bin Mohammed bin Rashid Al Maktoum, Chairman of Dubai Culture and Arts Authority, today launched a completely dedicated Thalassemia website at the Thalassemia Center of the Dubai Health Authority.

His Highness praised the efforts of the Dubai Health Authority (DHA) and its commitment to provide internationally recognized levels of care in chronic disease management. During his visit to the Thalassemia Center, he also visited the Dubai Cord Blood and Research Center and the Joslin Diabetes Center.

The team at Dubai’s only dedicated Thalassemia Center in Al Wasl Hospital has designed the site with separate areas for the public and healthcare professionals, in Arabic and English, to help boost education of the disease, and improve communication between itself and the center’s users.

His Excellency Qadhi Saeed Al Murooshid, Director General of the Dubai Health Authority, said:

“The DHA is dedicated to ensure that we reduce the prevalence of Thalassemia in our society and we have given high-priority to measures such as pre-marital testing. While we have implemented healthcare policies to tackle this disease, we realize that it is important to reach out to the public and provide them with up-to-date information on facts, diagnosis and treatment options. Moreover, we want the public and healthcare providers to have a forum to interact with each other, and this website provides such an opportunity.”

Al Murooshid added, “The DHA is keen on providing such easily accessible interactive forums which have information on disease and disease management, as this is crucial to further develop our patient communication systems.”

The website allows users to interact with each other, and to leave comments and suggestions for the center’s staff.

“What we want to do is match the ideal international chronic care module released by WHO, and a website containing accurate up-to-date information on the disease for patients, the public and healthcare professionals, is part of that,” said Dr. Khawla Belhoul, Director of the Thalassemia Center.

Dr. Belhoul added, “The education of patients is a key part of chronic disease management, and the website offers an easily accessible and comprehensive way of doing this. We want to encourage people to use the site to gather information, ask questions, leave comments, and take part in forums where they can discuss issues with other sufferers.”

“Healthcare professionals will benefit from having a localised resource containing international standard information, they can also email us for expert advice,” she said.

The website will add to the center’s already well established patient communication system that uses SMS to alert its patients to treatment changes, appointments, and the center’s activities.

One in 12 people in the UAE carry the gene for thalassemia, a blood disorder that reduces the number of normal blood cells in the body, according to figures collated by the DHA.

If two carriers have children, the likelihood of each child developing the disease is 25%. The lack of red blood cells prevents the normal flow of oxygen around the body, which presents with similar symptoms to anemia.

Around 40% of the patients at the Thalassemia Center are Emiratis, another 40% are expatriates from Asia and Africa, while 20% are other Arab nationals.

Medical students to come together for conference

Courtesy by: gulfnews.com

As students, we often find ourselves complaining about our adult-dominated lives. The 4th UAE Medical Students’ Conference, to be held from November 14-16, is a refreshing opportunity for medical students struggling to carve out a niche of their own instead of finding shelter in someone else’s cubbyhole.

The conference is being hosted this year by the University of Sharjah, Faculty of Medicine and Health Sciences. The event is organised by the Emirates Medical Students’ Society in collaboration with the Dubai Medical College for Girls, the Ras Al Khaimah Medical and Health Sciences University, Gulf Medical College, Universal Empire Institute of Medical Sciences and the University of Sharjah.

The theme
In keeping with its theme ‘Today’s students, tomorrow’s doctors’, the conference will allow students to interact with each other and attend lectures by guest doctors and speakers from the US, UK, Australia and Japan.

An impressive line-up of events that include workshops — many of them run by students; health awareness campaigns such as information booths on Thalassemia prevention, breast cancer, autism and H1N1; a career and internship fair; a multimedia competition and leisure trips has been planned.

The Dubai Health Authority celebrates quality week

Courtesy by: ameinfo.com

The DHA will celebrate healthcare quality week from the 1st to the 4th of November, 2009. All DHA hospitals and speciality centres will take part in this event.

Dr Mohammad Al Olama, CEO of the Hospital Services Sector initiated this celebration to promote the importance of achieving improved patient care outcomes and healthcare delivery systems. This year’s theme is, “Patient Safety, Our Priority”

Al Wasl, Dubai Hospital, Rashid Hospital, DHA Airport clinic, the Thalassemia centre and the Harvard-affiliated Joslin Diabetes Centre will take part in this event.

On the 4th of November, the DHA will hold a seminar as well as conduct other awareness activities at the Rashid Medical Library Auditorium to discuss this year’s theme- “Patient Safety, Our Priority.”

DP World in cooperation with Dubai Health Authority, revamps recreation area at Dubai Thalassemia Centre

Courtesy by: ameinfo.com

The Thalassemia Centre, the only facility in the UAE dedicated to Thalassemia treatment, has received a fully renovated recreation area thanks to support from DP World, UAE Region and the Dubai Health Authority (DHA).

The recently-inaugurated upgrade considerably enhances the Centre’s ability to serve around 450 Thalassemia patients who visit monthly for blood transfusions.

Thalassemia is a genetic blood disorder, notably prevalent in the UAE. The new revamped facility, designed and donated by DP World, UAE Region, is in line with the organisation’s commitment toward the awareness and prevention of Thalassemia.

The new recreational area offers transfusion chairs with individual multimedia screens, gaming consoles, computers, a library, a children’s play area, as well as a dedicated waiting area and a refreshments bar, all of which add significantly to the comfort of both patients and their families visiting the Centre, located within the Al Wasl Hospital complex.

Mohammed Al Muallem, Senior Vice President and Managing Director, DP World, UAE Region, said:

“The new facilities have been designed specifically to cater to the needs of the patients, while providing a more comfortable and productive environment for the patients, their relatives and caregivers. DP World, UAE Region is proud to have been able to collaborate with DHA on this upgrade, which advances our goals of improving the quality of life of those affected by Thalassemia, as well as increasing awareness that will lead to preventing the occurrence of this disorder.”

Dr. Khawla Belhoul, Director Thalassemia Centre, Dubai Health Authority, said:

“We are grateful for the ongoing support of DP World, UAE Region. The renovated recreational area will be of great benefit to both patients and visitors, especially those who escort the patients and must wait many hours for the transfusions to be complete.”

Thalassemia causes the degeneration of red blood cells, requiring those affected to undergo regular, life-long blood transfusions. As most carriers are unaware of their status, the Centre organises drives to promote premarital Thalassemia testing within the community. The test is simple and quick, and allows carriers to make decisions that help reduce transmission to future generations.

Life: Dealing with Thalassemia

Courtesy by: khaleejtimes.com

Sabiha Hassan, who recently completed school, wants to become a psychologist. As she speaks from her hospital bed, a small sack of blood hangs on an IV pole and a tube is attached to her arm. A blood transfusion is in progress but she remains nonchalant — after all, this is something she has been doing ever since she was a two-month old baby.

Sabiha is a thalassemic major patient, one among many cared for at the Dubai Thalassemia Centre at Al Wasl Hospital. “I have blood transfusions every three weeks. The transfusions grew more frequent because I use more blood as I grow older. Of course, it is a little more difficult than leading a normal life, but I believe that we are all tested by God,” Sabiha says, leaning back on her pillow. She ensured the disorder never affected her studies. “I fix an appointment for the transfusion a day before or after the exams. I have had my friends coming over to the hospital and we studied together during exams.”

Sabiha’s assuredness makes doubts about thalassemia being a deadly disorder fade at this point… only to return during a chat with Dr Ahmed Mohammed Kadhim, Specialist Registrar, Thalassemia Centre. During the chat, it transpires that patients afflicted with thalassemia major have a short lifespan. “We do have patients approaching their 40s but with frequent blood transfusions there will be an iron overload in their tissues, which can damage the heart, the liver and the pancreas,” explains Dr Ahmed. And blood transfusion is a management, not a cure. “The only cure for Thalassemia is a bone marrow transplantation so that the patient’s diseased marrow can be replaced with a well functioning one.” The procedure is not currently performed in the UAE, Dr Ahmed adds. “After the procedure, the child will have a 95 per cent chance of leading a healthy life, free from thalassemia. Still, there is a 10 to 20 per cent chance of the procedure resulting in complications and a five to 10 per cent chance of death.”

Blood transfusions alone, in Dubai, cost about Dh 50,000 to 70,000 per year — this, not including the nurses’, doctors’, laboratory and other expenses. But at the Thalassemia Centre, Dubai, the expenses are covered by numerous charitable institutions and foundations.

To dispose the excess iron overload in the body of the patient, an injection must be administered to the patient through a special pump — five or seven days a week — which must remain injected for around eight to 10 hours every day. “But the problem is that patients do not comply with the need to use this because of the pain,” says Dr Ahmed. The long hours of use also makes the patient shirk the injection.

What sets thalassemia apart from most ailments is that awareness programmes do not target the patients — but rather the carriers of the disease, the thalassemic minors. While explaining the reason for this shift in focus, Dr Ahmed points out, “Carriers of the disease can live normally and will not show symptoms.” Hence, identifying these carriers through a special blood test is becoming an increasingly urgent need.

Couples planning to start a family should keep in mind that a diseased chromosome from one parent and a normal chromosome from the other have a 50 per cent chance of resulting in an offspring who is a carrier. And if both partners are thalassemic minors, there is a 25 per cent chance of their child being a thalassemic major — which is why a blood test should gain priority over any other plans before fixing a wedding date. 
 Even as the doctor speaks, 17-year-old Raheel Saghir is a minute away from having a transfusion. After two nurses read out Raheel’s and the donor’s blood specifications (which included a ‘K negative’ — a blood subgroup), Raheel gets ready for his transfusion.

Born and brought up in the UAE, Raheel was diagnosed with thalassemia when he was a baby. Both his parents are thalassemic minors. “My 16-year-old brother has thalassemia major, too, but my sister is fine, mashallah,” says Raheel.

Having a brother with the same disorder has helped Raheel deal with thalassemia more easily. “We come for blood transfusions together,” he smiles.

Al Qudra Holding organizes Blood Drive

Courtesy by: eyeofdubai.com

As part of its corporate social responsibility commitments, Al Qudra Holding organized a blood donation campaign in collaboration with the Abu Dhabi Blood Bank on Monday 8 June 2009. The purpose of the campaign was to support people suffering from Thalassemia and cancer, as well as for those who require open heart surgery.

Eng. Jasim Al Hosani, Managing Director, Al Qudra Healthcare, stated “We are aware that a lot of patients are constantly in need of blood transfusions and the least we can do is secure this for them. We also recognize the importance of maintaining adequate blood stock levels in the UAE’s blood banks.”

“At Al Qudra, we believe in the principle that companies should contribute to the welfare of society. As such, I would like to thank all our employees who volunteered to donate blood, as well as the Abu Dhabi Blood Bank for its tremendous effort and humanity.” said Mahmood Ebraheem Al Mahmood, CEO, Al Qudra Holding.

The blood donation campaign was very successful, were over 40 Al Qudra Holding employees joined the company’s drive, donated blood and further expressed their keen interest in supporting similar campaigns in the future.

Inside the lab of hopes and fears

Courtesy by: thenational.ae

At first glance, it looks like any other sterile laboratory – airtight doors, work stations, white coats hanging in the changing room. But it is the freezers, and the liquid nitrogen vapour that pours out of the steel containers when they are opened, that lend an air of science fiction and offer the first clue that something special is going on.

In this unit attached to Al Wasl Hospital is housed the cord blood of more than 2,500 children, harvested from their umbilical cords and frozen at birth in the hope that the stem cells it contains can be used to fashion a cure in the event of disease striking later in childhood.

As such, the Dubai Cord Blood and Research Centre (DCRC) is the depository of the hopes and fears of hundreds of families in the UAE, particularly those in which there is a high chance of passing on certain genetic conditions.

“This offers a new horizon,” says Dr Mahmoud Taleb al Ali, head of research at the DCRC. “It offers hope to people. There was nothing like this before stem cells.”

Most of the blood held at the DCRC is from newborns whose parents have paid to have it collected and stored for their child’s exclusive use. But 30 per cent has been donated to the centre’s public bank and is available for use in any case that demands it . Now the centre is hoping that the number of donations will increase as more parents become aware of the bank’s work.

“Thirty per cent is a good number but it can be improved,” says Syed Abid Hussain Gilani, chief laboratory technologist at the centre.

“This is very new to the region but with education of health professionals and more awareness among the public we hope to get more. It will take time.”

Stem cells are “unspecialised” cells, basic building blocks capable of developing into various types of cell. Those found in cord blood – which, if not harvested, is thrown away after birth – can become red or white blood cells or platelets. The use of these “adult” cells bypasses the ethical difficulties that hamper research and therapies reliant on embryonic stem cells.

Over the past few years much work has been done around the world to develop therapies using stored cord blood to treat illnesses including some genetic disorders, cancers and immune deficiencies, including the inherited blood disease thalassemia, which is unusually prevalent in the UAE.

The DCRC has been offering parents the opportunity to store cord blood since June 2006. It was the first centre of its kind in the region and a major scientific development and, as such, is at the heart of new plans to develop stem-cell services across the Emirates.

In February, the Ministry of Health signed a memorandum of understanding with the Centre for International Blood and Marrow Transplant Research (CIBMTR) in the US, enabling the UAE to share in, and contribute to, advanced research regarding the collection, storage, transplantation and transfusion of bone marrow and blood stem cells. It joins Kuwait, Lebanon and Saudi Arabia in participating in the project.

The news was welcomed by Dr al Ali at the DCRC, which on its website describes cord blood as “the hidden treasure of life”.

“The centre provides cures,” he says. “It will save a lot of heartache for families, and money for the Government. Patients come here regularly and we know them all, it’s like a family.” For a Dh1,000 (US$272) service charge and Dh8,000 fee any family, including those with a history of genetic disorders, can store their child’s cord blood for 20 years. As a government service, the centre does not make a profit.

Alternatively, parents can donate the blood to a public stem-cell bank. “We like to think of making the birth of your baby count twice,” says a message on the DCRC website; “the new life of your new baby and the new life the cord blood could bring to someone else’s child.” The voluntary donations can be made only at government hospitals or private facilities which have received accreditation from the Joint Commission International, the global medical standards organisation.

Close matching is not necessary, although transplants of stem cells work best when they match the patient’s tissue type – and there is no better match than from a child’s own cord blood. No one is sure how long frozen blood stem cells survive – the technology is little more than a decade old – but it is thought they can be used for up to 20 years.

Collecting the blood does not interfere with labour. Couples who sign up for the DCRC’s services are given a collection kit to take with them to hospital when the woman goes into labour. When medical staff have collected about 50ml, which can be kept at room temperature for up to 30 hours, DCRC sends a courier. Back in the lab, the blood is tested for bacterial and viral infections, and then separated into cell types, so the stem cells can be isolated and removed. Sealed in a special bag, the cells are then stored in cassettes at between minus 150° and minus 196° Celsius in a tank containing liquid nitrogen.

Currently there are no facilities in the UAE where stem-cell transplants can be carried out, but the centre has already sent five cassettes of frozen cells to be transplanted abroad, for use in the treatment of illnesses including thalassemia and leukemia.

In three or four years, Dubai will have the infrastructure to take full advantage of stem cells, Dr al Ali said. As well as the storage and the research that is under way, there are also plans to build a transplantation centre.

The centre would like to see many more people take advantage of the service. “People here need a lot of education,” says Syed Abid Hussain Gilani, chief laboratory technologist.

“In this region diseases such as thalassemia are very common. Stem cell really is a great opportunity but it needs more education among the residents here and the medical professionals.

“We are doing a great job but it is by no means finished. We need more efforts. We have very strict acceptance criteria; there is about a 20 to 30 per cent chance of rejection.”

Dr al Ali, who is also director of the Centre for Arab Genomic Studies (CAGS), believes stem cells are the only long-term solution to easing the burden of genetic disease in the UAE and the rest of the Arab world.

One of the main contributors to the numbers of genetic diseases is consanguineous marriages, but “if there is a case of disease in the family in the future, the family can use the stem cells, if the compatibility is good”.

Dr Muna al Saffar, project manager of research at the Dubai Harvard Foundation for Medical Research and a genetic counsellor, says building transplant facilities is the top priority. But it will be equally important to the UAE if the GCC countries co-operate and develop a unified approach to stem-cell research.

“It is not about being the first, it is important to be doing good things,” she said. “We are a small country compared to some others so we should join forces.

“We just need to make sure we have the infrastructure in place. There are many things where we do not have to invent the wheel, we can gain from someone else’s experience.”

Research was another priority: “It is an area where at least there is relevance because of some of the conditions in the region. Autosomal recessive conditions happen through a mutation or a change in a gene. This has to affect both parents, not just one. Globally it is important to understand how the condition occurred and how the gene has been affected.”

Joining the CIBMTR was a step in the right direction, she said. When the memorandum of understanding was signed with the UAE Transfusion Services, Dr Amin al Amiri, chief executive for medical practice and licensing, said it would encourage an exchange of research and allow UAE experts to train in Florida.