Rare disease day

Rare diseases present unique challenges.

Many families have never heard of Duchenne before a diagnosis. It might be the first case your GP has seen, and it’s unlikely your friends and families will have heard of the condition.

Rare disease day helps us to reach outside our community, to spread awareness and raise the profile of Duchenne and we’ve recorded a special edition of Duchenne Science Live to mark the day.

There are between 6,000 and 8000 rare diseases and together they affect approximately 3.5 million people in the UK. We know it’s impossible for anybody to know everything about every condition but we know that raising the profile of rare diseases even slightly will help some of our families and those diagnosed in the future.