Dubai: Families from across the UAE marked Rare Disease Day 2022 with a lighting up ceremony on the world’s tallest building, Burj Khalifa in Dubai.
Many families gathered in Dubai’s Downtown and many more tuned in online to witness the lighting of Burj Khalifa, offering messages of support for the 300 million people living with a rare conditions worldwide, under the unifying message ‘Show Your Rare’.
The initiative aims to build awareness on rare diseases and their impact on patients and their families across the world.
Rare Disease Day is held annually around the world on the last day of February in support of those suffering from rare diseases, their families and their care-givers. According to the World Health Organisation, rare diseases affect 300 million people around the world, but only 5 per cent of the cases are treated. In Middle East and North Africa, an estimated 2.8 million people live with rare diseases, nearly half of them children.
Rare Disease Day Dubai has been organised since 2018 by High Hopes Paediatric Therapy Center, the not-for-profit early intervention paediatric therapy centre licensed under the Community Development Authority (CDA).
The lighting ceremony was a collaboration between High Hopes, Genpharm and the Loulou Foundation.
“The amazing support from the UAE community has made Rare Disease Day an important date on the country’s annual calendar, as we all stand together to recognise those suffering from rare diseases and their families,” said Lynn Barghout Jafar, a rare diseases mother, Founding Mum of High Hopes Paediatric Therapy Center and co-founder of Loulou Foundation.
Karim Smaira, the Genpharm co-founder and CEO, said: “Our core mission since inception has been to support rare disease patients and families by raising awareness and providing access to therapies and cures.”