Dubai: A large number of people participated in the ‘Walk and Play’ event held in partnership with UAE Genetic Diseases Association in Dubai to mark the World Rare Disease Day 2018.
The event was held as part of the Year of Zayed programmes at the Meraas Kite Beach on Wednesday.
Commenting on the event, Shaikh Nahyan Bin Mubarak Al Nahyan, Minister of Tolerance and president of the UAE Genetic Diseases Association and the High Hopes Pediatric Therapy Centre in Dubai, said observing the World Rare Disease Day encourages everyone to be kind, tolerant and considerate towards those suffering from these difficult conditions.
“As understanding and awareness in the UAE grow and medical research expands, the ability to diagnose and support these patients is helping them to live better lives and improve the outlook for the future,” he added.
The event saw participation by children with rare diseases and their families, care-givers, friends and supporters, including Meraas and Union Coop, local and international companies and associations.
The ‘Walk and Play’ event was organised with the help of a dedicated group of mothers of children with rare diseases from different nationalities who are living in the UAE, including Cathy Paul-Fijten from The Netherlands, Jamie Hutson from Canada, and Hind Eltayeb from Sudan.
The initiative hopes to encourage more people to get involved to raise awareness about rare diseases, encourage diagnosis and improve access to treatment and medical representation for patients with rare diseases and their families.
Together, rare diseases affect one in 17 people or over 400 million people worldwide. “On this day, we unite in solidarity with patients affected by rare diseases and their loved ones to increase awareness and improve knowledge across society about rare diseases. We are especially happy to hold this event in the Year of Zayed in the spirit of inclusion, tolerance and support for all those who need help, as per the noble ideals established by the founder of the UAE.” said Lynn Barghout Jafar, founder of High Hopes Pediatric Therapy Centre and mother of a child with a rare disease and complex special needs.
Each year World Rare Disease Day is observed on this day at hundreds of events in over 100 countries around the world to raise awareness about these conditions and the impact these diseases have on the lives of the patients and their caregivers. A rare disease is one that affects a small percentage of the population. There are over 7,000 identified rare diseases with most of them genetic in origin and over 75 per cent affecting children. Very few have any available treatment, and most patients and their families struggle with lifelong and numerous health challenges and can go undiagnosed for many years due to lack of awareness or testing.