More than 1,500 walkers in Dubai show solidarity with families for Rare Disease Day
More than 1,500 UAE residents stepped out in support of people battling rare diseases at a major event in Dubai.
Proud parents, family members and well-wishers alike took part in a walk at Dubai’s Kite Beach yesterday in a show of solidarity replicated all over the world.
They were joined by Sheikh Nahyan bin Mubarak, Minister of Tolerance, at one of 103 international events held to mark Rare Disease Day.
More than 300 million people worldwide are affected by one of 6,000 rare diseases, defined as one that affects fewer than one in 2,000 people. The Dubai gathering was organised by the non-profit organisation High Hopes Paediatrics Therapy Centre, in Jumeirah.
The organising committee of High Hopes includes three mothers with children who have rare diseases.
“We wanted to advocate inclusion and tolerance,” said Lynn Barghout Jafar, the founding member of the group.
She has a five-year-old daughter with CDKL5 deficiency disorder and said she knows of only four to five families in the region who have members with the disorder, in which a gene mutation impairs brain development.
“In the first walk, which took place in 2018, we had about 400 people. It’s really grown in momentum. We really feel the UAE is the most inclusive place to be,” Ms Jafar said.
Catherine Paul-Fijten, another High Hopes committee member, has a daughter, also aged 5, with an extremely rare disorder called ZC4H2 deficiency, in which the body is missing a protein that enables communication between the muscles and the brain.
“We were in a very dark place when we found out [the diagnosis], especially because there’s almost no one who has that condition,” Ms Paul-Fijten said.
“We are stronger as a community and we need to share knowledge with each other, which is why events such as this are so important.”
Sheikh Nahyan thanked the crowd for supporting the cause.
“In coming together on this Rare Disease Day, we are faced with a crucial realisation that rare diseases can happen to anyone, at any stage in life,” he said.
“On national and global scales, these diseases are rare but the number of people afflicted by them is very large.
“Further, the societal impact of those affected is even greater, with whole families – and often communities – presented with a daily, often despairing battle with an uncertain future.”