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Dubai marks Rare Disease Day

Dubai, 3rd March, 2019 (WAM) -- High Hopes Pediatric Therapy Centre in Dubai, in partnership with Al Jallilah Children’s Specialty Hospital and the UAE Genetic Diseases Association, have marked Rare Disease Day 2019 with a family event on Meraas Kite Beach, Dubai.

The event was held under the patronage of Sheikh Nahyan bin Mubarak Al Nahyan, Minister of Tolerance and President of UAE Genetic Diseases Association.

Hundreds of families gathered to walk, fly kites and enjoy an afternoon of family fun in solidarity with families suffering from rare diseases. 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.

Held under the theme, 'Bridging health and social care', the event focused on tackling the gaps in 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.

"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. As understanding and awareness in the UAE grows and medical research progresses, the ability to diagnose and support these patients will help them live better lives and have a brighter future," said Dr. Maryam Matar, Founder and Chairperson of the UAE Genetic Diseases Association.

A rare disease is one that affects a small percentage of the population; there are over 7,000 identified rare diseases, most of them genetic in origin, with over 75 percent affecting children. Collectively rare diseases affect 1 in 17 people, or over 400 million people worldwide.

 

WAM/Rola Alghoul/Esraa Ismail