First patients arrive at UAE-funded research centre in famous London children’s hospital
▶ Medics at the Zayed Centre in the Great Ormond Street Hospital for Children are developing new treatments
A UAE-funded research laboratory at the world’s most famous children’s hospital welcomed its first patients, marking another milestone in the centre’s mission to find cures for rare diseases in young people.
Patients and researchers walked through the doors of the Zayed Centre for Research into Rare Disease in Children at London’s Great Ormond Street Hospital for the first time this week.
“Everyone deserves hope,” said Gladys, the mother of Omar, 3, from Dubai, who was born prematurely with a heart defect and is receiving treatment at the hospital. “Alone we are rare but with your support, together we are strong.”
For new patient Aysha, 6, the specialist treatment available at the research centre is vital.
Aysha, also from the UAE, travels to the hospital every two weeks for intensive treatment after she was found to have a pilocytic astrocytoma, a rare type of tumour.
Though benign, it keeps coming back and puts pressure on Aysha’s brain, causing seizures and problems with her vision.
She is given an infusion to help reduce the size of the tumour and relieve the pressure on her brain. A medical device called a ventriculoperitoneal shunt is sometimes used to drain excess fluid.
Doctors describe Aysha as “an extremely caring, charismatic and courageous young girl who has touched the lives of everyone with her energetic twirling and non-stop smiling”.
The centre, a joint effort between the hospital and University College London, brings patients and their families to researchers who are leading the search for cures for rare diseases. Research includes genomics, cell therapy and regenerative medicine.
Andrew Taylor, clinical director of operations at the hospital, said the centre allowed doctors to “really begin to take forward our understanding of genetics in rare diseases and the treatments we can develop to help cure some of them”.
“The idea of the research centre is to convert those new treatments, where we’ve treated one or two patients, into helping more and more children and their families,” Prof Taylor said.
The result of a July 2014 gift of £60 million (Dh283m) from Sheikha Fatima, Mother of the Nation, the centre was completed in July and inaugurated by Sheikh Theyab bin Mohamed.
“We are hugely grateful to the Abu Dhabi royal family for everything they’ve done,” Prof Taylor said.
He said that more than 6,000 diseases were classified as rare.
“The thing about rare diseases is that they’re not actually that rare,” he said. “One in 17 people will suffer from a rare disease at some point in their lives.”
The new labs at the centre, with room for about 140 researchers, are just below ground level and are visible from the street and to patients in the building.
“I think this is a real first,” Prof Taylor said.
Most medical research laboratories are often separated from the hospitals and patients they serve and are not easily accessed by the public.
Dr Moritz Haneklaus, one of the first researchers to move into the labs at the centre, said he was still getting used to working in such an open and visible environment.
“It’s about inviting the public in,” said Dr Haneklaus, who is part of a team studying brain development and brain diseases using stem cell models.
He said the centre was ideal “because you have access to the hospital as well as great research facilities”.
More than 300,000 patients visit the UK’s first dedicated children’s hospital each year and more than 1,000 patients from the UAE have been treated there in the past eight years.
The Zayed Centre building, designed by architects Stanton Williams, was built to meet the needs of patients and researchers.
The first scientists arrived to take up their posts at the new labs on Monday.
They will work beneath a mural designed by British artist Mark Titchner, based on the words of the American author and activist Helen Keller, who contracted a disease when she was 19 months old, leaving her deaf and blind.
The inscription “Together we can do so much” is emblazoned over a design based on Arabic script and international flight lines.
One in 17 people will suffer from a rare disease at some point in their lives ANDREW TAYLOR Clinical director of operations, Great Ormond Street Hospital
Andrew Taylor, clinical director of operations at the hospital, said the centre allowed doctors to understand the role of genetics in rare illnesses