Several UAE residents will commemorate Rare Diseases Day with a walk along Kite Beach on Thursday, February 28, as part of a global campaign to raise awareness for families of patients with rare diseases.
A disease or disorder is defined as rare when it affects fewer than one in 2,000 people. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
These conditions are hard to diagnose and hard to treat. However, there are over 7,000 illnesses identified as rare diseases, most of them genetic in origin, with over 75 per cent affecting children worldwide. About 80 per cent of them have identified genetic origins, while others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
Catherine Paul-Fijten one of the organisers said: “The theme for this year is ‘Bridging Health and Social Care’, focusing on tackling the gaps in the coordination between medical, social and support services to address the challenges that people living with a rare disease and their families around the world face every day. Paul-Fijten is a mother of a child with an ultra-rare condition who, together with her husband John, founded the ZC4H2 Research Foundation, a private, non-profit foundation dedicated to supporting research on the condition that affects her youngest daughter.
The 400-metre walk will begin at 3.30pm on Thursday at Kite Beach. Residents can register by emailing: firstname.lastname@example.org