
Thu 01-03-2018 19:28 PM
DUBAI, 1st March, 2018 (WAM) — The High Hopes Pediatric Therapy Centre in Dubai, in partnership with UAE Genetic Diseases Association, have held a ‘Walk and Play’ event for World Rare Disease Day 2018, coinciding with the Year of Zayed at Meraas Kite Beach, under the patronage of Sheikh Nahyan bin Mubarak Al Nahyan, Minister of Tolerance and President of UAE Genetic Diseases Association, Sheikh Nahyan said, “In line with the UAE’s vision of tolerance and inclusion, the celebration of 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 grows and medical research is expanded, the ability to diagnose and support these patients is helping them to live better lives and improve the outlook for the future.”
The event saw participation from rare disease children and their families, care-givers, friends and supporters, including Meraas and Union Coop, local and international companies and associations.
The 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. The initiative hopes to encourage more people to get involved to raise awareness for rare diseases, encourage diagnosis, and improve access to treatment and medical representation for patients with rare diseases and their families. Together rare diseases affect 1 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 held 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.” Lynn Barghout Jafar, Founder of High Hopes Pediatric Therapy Centre and mother of a child with a rare disease and complex special needs, said.
WAM/Rola Alghoul/Hassan Bashir