By Ron Chen, Senior Correspondent ASEAN Region
Families from across the UAE marked Rare Disease Day 2022 with a lighting ceremony on Burj Khalifa to build awareness of rare diseases and their impact on patients and their families across the world. 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 disease worldwide, under the unifying message “Show Your Rare.”
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 Organization rare diseases affect 300 million people around the world, but only 5 per cent of cases have treatments. In MENA, an estimated 2.8 million people live with rare diseases, nearly half of them children.
Rare Disease Day Dubai has been organized since 2018 by High Hopes Pediatric Therapy Center, the not-for-profit early intervention pediatric therapy center licensed under the Community Development Authority (CDA), and in the past welcomed hundreds from the community for walks on Kite Beach. Monday’s lighting ceremony was a collaboration between High Hopes together with Genpharm and the Loulou Foundation, which partnered to organize the event and raise awareness of rare diseases.
“The amazing support from the UAE community has made Rare Disease Day an important date on the country’s calendar every year, as we all stand together to recognize those suffering from rare diseases and their families,” said Founding Mum of High Hopes Pediatric Therapy Center and co-founder of Loulou Foundation as well as a rare diseases mother, Lynn Barghout Jafar.
She added: “On this day, we build awareness and improve knowledge across society about such rare diseases and give thanks to the leadership and community of the UAE for their support to all People of Determination. We are grateful for the participation of Genpharm, and all our supporters on this important day.”
Genpharm Co-Founder and CEO Karim Smaira said: “This year’s Rare Disease Day coincides with our 10th Year Anniversary at Genpharm. Our core mission since inception has been to support rare disease patients and families by raising awareness and providing access to therapies and cures.”
Genpharm Co-Founder and Chairman Kamel Ghammachi added, “Today, we are proud to be partnering on this special day with like-minded organizations, High Hopes and Loulou Foundation, to light up the Iconic Burj Khalifa, a true representation of what RARE is: strong, beautiful and proud.”
Earlier the same day the fourth high-level meeting of the NGO Committee for Rare Diseases was also held at the Swedish Pavilion at Expo2020 Dubai. The meeting hosted dignitaries and patient advocates from around the world to discuss how key global intergovernmental commitments, like the United Nations Political Declaration on Universal Health Coverage (UHC) and the recently adopted United Nations General Assembly Resolution on Addressing the Challenges of People Living with a Rare Disease. Key topics focused on how the UN resolution can be adopted on regional, national and local levels to raise awareness of Rare Diseases.