Across Europe, approximately 30 million people are estimated to live with a rare disease – in other words, more than 5% of the population are affected by rare diseases and this doesn’t even reflect the families and caregivers who support them.
Rare diseases may be rare when considered individually, but put together, their societal impact is substantial. There are between 6,000 and 8,000 known rare diseases affecting people living in the EU and most are chronic, progressive, degenerative, disabling and frequently life-threatening.
It is especially daunting that almost 70% start in early childhood, affecting children’s quality of life, wellbeing and lifespan. So, how do we make sure these patients get the best care possible? It requires a coordinated and multidisciplinary effort to improve care for people with rare diseases.
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