World Rare Disease Day

World Rare Disease Day

1st Mar 2017

February 28th marked World Rare Diseases Day, a day dedicated to helping people understand more about some of the planet’s more obscure medical issues.

 

Now in its ninth year, the event was publicised worldwide through a series of workshops, reports, seminars and even social media campaigns all with the goal of trying to help those suffering from rare conditions receive the medical support and help they deserve.

 

This year’s main focus was on research, with examples of successful advancements shown and spoken about - and pleas for more funding to allow work to be undertaken into understanding the details behind the conditions heard from some of the world’s leading experts.

 

The definition of a ‘rare disease’ can vary depending on where you live, however globally it is accepted to be a condition that affects roughly fewer than 1 in every 1500 people. This means that issues are often closely related to unique cultural factors impacting everyday life in the country.

 

In the UAE the country has placed a focus on tackling Inborn Errors of the Metabolism System, a rare genetic condition impacting an estimated 1 in every 1700 people throughout the Emirates. Patients suffering from IEM are unable to properly turn food into energy, with the disorder usually caused by enzyme defects.

 

The UAE has the world’s highest rate of these conditions, and this is believed to be as a result of the high consanguineous marriage rates in the country. A small native population and Arabic traditions mean that marriages between distant relatives are still commonplace, and this is believed to be related to gene defects in the children of these marriages.

 

As a result of this screenings for newborns are free across all government owned hospitals in the country, in an attempt to try and detect any issues at the earliest possible stage. If it is discovered at an early stage medics can work to try and help the patient manage the condition, whilst if it goes unnoticed IEM suffers can find themselves at an increased risk of a range of conditions, from joint pain to strokes and seizures.

 

World Rare Disease Day came just 24 hours after Dubai Science Park and Sanofi agreed a deal to create a world reading research facility, aimed at developing and delivering transformative therapies for those suffering from some of the planet’s rarest health issues.

 

It is hoped that the new facility will mark the start of a serious fightback against rare diseases across the Middle East, with education and understanding being the keys to this.

 

The United Arab Emirates is one of the most popular destinations with expat medics looking to move to a country where their skills are truly appreciated. If you believe that your future could lie in the Emirates, simply register on our website to start your journey to a more rewarding career today.

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