Families mark Rare Disease Day in Dubai
The event sought to encourage UAE society to raise awareness of rare diseases
Dubai: Hundreds of families gathered in Dubai to walk, fly kites and enjoy a fun-filled afternoon to mark the Rare Diseases Day in the UAE and to show solidarity with the affected families.
The event sought to encourage UAE society to get involved and raise awareness of rare diseases and the importance of diagnosis and inclusion of children and adults suffering from them.
The event was held under the patronage of Shaikh Nahyan Bin Mubarak Al Nahyan, Minister of Tolerance, and President of UAE Genetic Diseases Association. High Hopes Pediatric Therapy Center in Dubai joined hands with Al Jallilah Children’s Specialty Hospital Hospital and the UAE Genetic Diseases Association, to mark the Rare Disease Day 2019 at the Meraas Kite Beach.
“We stand in solidarity with the families living with conditions due to rare diseases and extend our hand of support,” said Shaikh Nahyan.
The theme for Rare Disease Day 2019 was "bridging health and social care", focusing on tackling the gaps in the coordination between medical, social, and support services to tackle the challenges that people living with a rare disease and their families around the world face every day.
The celebrations included a walk along the promenade at Meraas Kite Beach in Jumeirah followed by kite flying, speeches, and family activities for the whole family.
Rare Diseases Day marked in more than 100 countries
Rare Disease Day is marked on February 28 every year in over 100 countries around the world to raise awareness about these conditions and the impact the diseases have on the lives of the patients and their caregivers.
This is the second year in a row that Rare Disease Day is marked in the UAE.
A rare disease is one that affects a small percentage of the population.
According to available statisitics, there are over 7,000 identified rare diseases, most of them genetic in origin, with over 75% affecting children. Collectively rare diseases affect 1 in 17 people, or over 400 million people worldwide.
Very few have any available treatment, and most patients and families struggle with numerous health challenges and life-long ailments that can go undiagnosed for years due to lack of awareness or testing.
The celebrations were organised with the help of a diverse and dedicated group of mothers of children with rare diseases living in the UAE. They included Cathy Paul-Fijten from The Netherlands, Jamie Hutson from Canada, and Hind Eltayeb from Sudan.
“We are especially happy to hold this event in the Year of Tolerance, as the UAE celebrates the spirit of acceptance, inclusion, and support for all those in need help, in keeping with the noble ideals established by the late Shaikh Zayed, the founder of the UAE, ” said Cathy Paul-Fijten, board member of High Hopes and advisory board member of Al Jallilah Children’s Specialty Hospital, who is the mother of a child with a rare disease.
“In line with the UAE’s vision of tolerance and inclusion, the celebration of World Rare Disease Day in the Year of Tolerance encourages everyone to be kind, tolerant, and considerate towards those suffering from these difficult conditions,” said Dr. Maryam Matar, Founder and Chairperson of the UAE Genetic Diseases Association.
About Rare Disease Day
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
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 than half of rare diseases affect children.
About High Hopes Pediatric Therapy Center
High Hopes is an Early Intervention Pediatric Therapy Center based in Dubai that caters to children with special needs from the ages of 0-14 years old.
It is a place where these very special kids can develop, progress, and also have fun under the supervision of the most experienced and specialized therapists.
The not-for-profit center offers a holistic solution for Dubai parents who would otherwise have to travel to disparate locations to deliver the right combination of service and care for their special needs children.