Dubai: More than 1,500 people on Saturday walked in solidarity with families of determined ones at Dubai’s Meraas Kite Beach to mark Rare Disease Day, held annually on the last day of February,
A rare disease is broadly defined as one that affects a small section of the population, such as fewer than 1 in 2,000 people. Examples include cystic fibrosis, muscular dystrophy, spina bifida, and haemophilia.
Rare Disease Day, a global campaign observed every year in over 100 countries, aims to raise awareness on the plight of patients suffering from rare diseases and their families. Worldwide there are over 300 million people – 75 per cent of them children – suffering from 6,000 identified rare diseases
There are no treatments or cures for most of the rare diseases. Many of them have a genetic cause and affect more people globally than cancer, malaria and tuberculosis combined.
Community strength
On Saturday, UAE residents joined organisations and entities in raising awareness on rare diseases and showing solidarity with people with rare diseases and their loved ones. An announcement at the start of the event said Burj Khalifa, the world’s tallest tower in Dubai, was to light up at 7.45pm for Rare Disease Day.
Addressing the crowd before the walk at Kite Beach, Shaikh Nahyan Bin Mubarak Al Nahyan, Minister of Tolerance, said rare diseases “can happen to anyone, at any stage in life”.
He added that though such diseases are rare on a global or national scale, the numbers of people associated with them are large.
‘Collective responsibility’
“This walk is a fantastic illustration of the need to come together, to connect around this most important cause, to honor those individuals and families battling with rare diseases. It is our collective responsibility to provide the means to diagnose and treat rare diseases. At the same time, we must be focused on ensuring that those with rare diseases will have access to relevant and helpful programmes to adapt to their conditions and to experience the joy of life,” he added.
Now in its third year in Dubai, the event was organised by High Hopes Pediatric Therapy Center in collaboration with Al Jalila Children’s Hospital, Expo 2020 Dubai, UAE Genetic Disease Association, Dubai Police, Community Development Authority (CDA) and many other private and public entities.
‘Scope for improvement’
Participating for the first time at the event, Rajendra Patil, whose 16-year-old daughter Revaa has cerebral palsy, said “there is a scope for improvement” when it comes to public awareness on rare diseases.
“Dubai government is really doing well in raising awareness. As a family, we try to participate in as many supportive events as we can,” said Patil, from India.
His wife Anuradha said they took part in ‘Dubai Move’ last year, also held at Kite Beach, in support of people of determination.
Revaa, who attends Rashid Centre for the Determined Ones in Dubai, is “fluent with computers”, enjoys drawing and is a cricket fan. She was delighted to have met Shaikh Nahyan at the event.
Saturday’s event was supported by government institutions and local companies and was one of 185 events held to commemorate Rare Disease Day in 103 countries around the world.
Advocate mothers
Rare Disease Day Dubai was organised by High Hopes Pediatrics Therapy Center, the Dubai-based not-for-profit early intervention pediatric therapy center licensed under CDA. The organising committee was comprised of a dedicated group of advocate mothers from the wider UAE community, including Lynn Barghout Jafar, Founding Mum of High Hopes; Catherine Paul-Fijten; and Jamie Hutson. The families and participants joined the walk and then took part in activities, including flying kites together.
Wide participation
They were joined by Expo 2020 Dubai, CDA, Dubai Police, Dubai Civil Defence, and a wide mix of organisations and centres focused on rare diseases and supporting people of determination. Numerous companies and local organisations also participated, including Crescent Petroleum, ASGC, Exalto Emirates, FLC Group, Meraas Kite Beach, LMTD, SALT, and the ZC4H2 Research Foundation.
Record turnout
This was the third year Rare Disease Day is held in Dubai, and Saturday’s commemoration witnessed record turnout – more than 1.500 participants – demonstrating the level of community attention to and tolerance for people of determination.
“The turnout and support by the UAE community has made Rare Disease Day an important date on the country’s calendar, as we all stand together with those suffering from rare diseases and their families,” said Lynn Barghout Jafar, Founding Mum of High Hopes Pediatric Therapy Center, participating in the event with her daughter, who has a rare disease.
February 29, 2020, was the 13th international Rare Disease Day coordinated by EURORDIS.
About 80 per cent of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative. More information is available on www.rarediseaseday.org
