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Research is important for rare diseases

The theme for this year’s Idiopathic Hypersomnia Awareness Week is “Research”. We share the theme of “Research” with this year’s Rare Disease Day.

“Imagine going to see your doctor only to be told that they don’t know what is happening to your body, that they don’t know what your disease is. Imagine that they can diagnose your disease but tell you that there is no cure or treatment available. Or that the treatment available is not fully effective but just the best possible option. You don’t know how you or your loved one will manage life from one day to the next, nor how the disease will affect your work or school life. This is the reality for many rare disease patients.”

This is the reality for people with Idiopathic Hypersomnia.

“Research can lead to the identification of previously unknown diseases and can increase understanding of diseases. It can enable doctors to give a correct diagnosis and provides information to patients about their disease. It can lead to the development of new innovative treatments and in some cases a cure. Research is key. It brings hope to the millions of people living with a rare disease across the world and their families.” - Rare Disease Day February 28th 2017

These words from the 2017 Rare Disease Day are very fitting for the Idiopathic Hypersomnia Awareness Week because this is the hope people with Idiopathic Hypersomnia have.

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