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Spotlight on Gene Therapy: finding a Cure

Rare Disease Awareness

Posted On: Tuesday, February 09, 2016 Posted By: Florie Borel Tags: Alpha-one antitrypsin, Amyotrophic lateral sclerosis, Cystic fibrosis

 

 

Rare Disease Day takes place on the last day of February each year. It aims at raising awareness for rare diseases, also called orphan diseases, who affect a small number of people worldwide.

What is a rare disease?

The definition of an orphan disease varies. In Europe, it is defined as a disease affecting less than 1 in 2000. In the US, it is defined as a disease that affects less than 200,000 Americans at a given time.

What can we do?

People who suffer from rare diseases can face many obstacles: delay in diagnosis but also difficult access to treatment or even absence of treatment. We believe that awareness can improve this situation and make life better for those patients and their families. Take this opportunity to learn more about rare diseases and support local events. You can also share this information on social media!

 

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