On February 28, several UAE residents are going to commemorate the Rare Disease Day and going to walk along Kite Beach. It is a global campaign which aims to raise awareness for families of patients fighting with rare diseases. The residents will walk about 400-metre which will begin at 3.30pm on Thursday at Kite Beach.
A disease or disorder is considered to be rare when it affects less than 200,000 people. In the USA a disease or disorder is defined as rare when it attacks less than 200,000 Americans at any given time.
These rare diseases are quite tough to diagnose and hard to treat. However, over 7,000 illness has been identified across the world as rare diseases most of which are genetic in origin, with over 75 percent affecting children worldwide. 80 percent of the affected have been identified as genetic origins while other because of infections, allergies, environmental causes.
Catherine Paul-Fijten one of the organizers 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.”
In this field, the ZC4H2 Research Foundation is a renowned one, a private non-profit foundation which is dedicated to supporting research on the ultra-rare condition patients. It was founded by Paul-Fijten and her husband John whose youngest daughter also had an ultra-rare condition.

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