There are approximately 7000 rare diseases
350 million people are affected worldwide -
75% are children;
30% of them will not see their 5th birthday
Spinal Muscular Atrophy is but one of these rare diseases: Joubert's is another. I thought that our world was small but when we stand together Eilidh and Finn are not alone; Katie and I are not alone and together there is a whole lot of hope because, worldwide we have a huge voice and we should be shouting loudly and proudly!