People affected by rare diseases often face extraordinary barriers. They can find it difficult to get the right diagnosis, expert advice or treatment and support. It’s challenging – especially when they are trying to cope with the uncertainty of an often progressive, devastating and debilitating disease. But the complexity of these conditions, and the small number of patients affected, means this area of research doesn’t always attract the greatest interest. Read more: http://bit.ly/1Qom8vx

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