New portal launched to support patients and families
Dubai: The UAE Rare Disease Society on Saturday held a portal opening ceremony at the Expo 2020 Dubai to mark World Rare Disease Day 2022 and shed light on rare diseases and those families and patients living with rare conditions throughout country. Featuring live performances and entertainment, the society also hosted a family event at Al Wasl Dome and led the Expo daily parade in solidarity with the 400 million people worldwide living with a rare disease.
The Rare Disease Day event at Expo 2020 Dubai was part of the UAE Rare Disease Society’s efforts to raise awareness of rare diseases affecting families across the emirates and celebrate rare disease heroes and their families.
The activity marked this year’s Rare Disease Day, which takes place on the last day of February each year and is a global initiative to raise awareness and generate change about rare diseases and their impact on the lives of patients and families. The campaign targets the public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers and health professionals. While rare diseases are typically classified as those which affect fewer than five in 10,000 people, as there are more than 7,000 individual conditions, collectively they have a significant impact on families and communities.
Marwan Janahi, chair of the UAE Rare Disease Society and managing director of Dubai Science Park, said: “We at the UAE Rare Disease Society are here today at Expo 2020 Dubai in support of all those living with rare diseases in the UAE and to mark Rare Disease Day. It is critical that we share the stories of people living with rare conditions and are grateful for our partner at Expo 2020 Dubai for providing us with this platform to do so.
“Our society is committed to giving our heroes living with rare diseases and their families the medical, psychological and social support they need and deserve. But we can’t do it alone. We want to raise awareness and reduce stigma among the public, work with medical professionals to speed up times for diagnosis, and encourage more research and investment into
rare diseases – their identification, treatment and prevention.”
The Expo 2020 portal launch was followed by a family-friendly event at Al Wasl Dome, which began with an opera performance of the UAE National Anthem, and featured live performances and entertainment including an immersive and educational session with for parent, patients, and the all audiences to enjoy.
The society’s new mascots also made their first official appearance at the event. They included Mayed and Meera, who provided the audience with an informative session on the topic of rare diseases in the UAE. The Wasl Dome was also lit up with blue, green, pink, and purple lights, the official colours of Rare Disease Day.
To mark the day, the Al Wasl Dome at Expo will light up at 8.50pm on Sunday and Monday as well.
Khazina Al Mansoori, parent of Shamma, a 18-year-old living with Williams syndrome said: “Being a parent of a child living with a rare condition comes with its challenges as well as its magic moments, and I am grateful for the society’s unwavering support and for raising awareness of rare diseases in the UAE as we continue to fight the stigma and lack of understanding about those affected by rare conditions. I am also thankful for the UAE Government and all of our doctors’ commitment and dedication to ensuring that our children are provided with the quality treatments and therapies that they need.”
Dr. Amal Al Tenaiji, consultant pediatric metabolic genetics, Khalifa Medical City, stated: “Around 80 percent of rare diseases in the UAE are genetic and it is important that we continue to shed light on the rare conditions affecting numerous families across the Emirates. It is events such as these that help us to educate the public and raise widespread community awareness.”
“We also need to raise awareness among our colleagues in the medical community, to ask them to think about the possibility of rare diseases when making a diagnosis. On average, patients with rare diseases and their parents wait six years before being properly diagnosed, and that’s something we can work to improve. As we mark this year’s Rare Disease Day, I urge the medical community and people of the UAE to come together to provide their support for our heroes living with rare diseases as well as their families.”
The event concluded with the Expo daily parade, which was led by Dubai Police Marching Band followed by the society and its friends including families and heroes from across the UAE, and took participants through some of Expo 2020’s pavilions.
As many as 400 million people worldwide currently live with rare diseases, 72 per cent of which are genetic. An estimated 7.8 million people in the Middle East are living with a rare disease today – three in four of which are children.
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