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Under the patronage of H.E Sheikh Nahyan Bin Mubarak Al Nahyan, Cabinet Member and Minister of State for Tolerance of UAE & President of UAE Genetic Diseases Association, High Hopes Pediatric Therapy Center in Dubai, in partnership with Al Jallilah Children’s Specialty Hospital Hospital-- the first and only children’s hospital in UAE-- and the UAE Genetic Diseases Association, marked Rare Disease Day 2019 with a family event on Meraas Kite Beach.
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.
“We are proud to have marked Rare Disease Day in the UAE, joining people all over the world in shedding light on these diseases and the importance of finding cures for them. We stand in solidarity with the families living with these conditions and extend our hand of support,” said H.E. Sheikh Nahyan bin Mubarak Al Nahyan, UAE Minister of State for Tolerance and President of the UAE Genetic Diseases Association.
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 Disease Day is marked on 28 Feb. 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 will be the second year that Rare Disease Day is marked in the UAE.
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% 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.
“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 H.E. Dr. Maryam Matar, Founder and Chairperson of the UAE Genetic Diseases Association.
“On this day, we unite in solidarity with patients affected by rare diseases and their loved ones to building awareness and improving knowledge across society about rare diseases. 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 Sheikh 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.
About Rare Disease Day
28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.
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.
World Disease Day: https://www.rarediseaseday.org/
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.
High Hopes Pediatric Therapy Centre: http://www.highhopesdubai.com/
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