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Rare Disease Day

Rare Disease Day is held on 28th February or 29th in a leap your – the rarest day of the year!!

The awareness day is patient led – this means by everyone, including you! It is led by everyone, your families, clinicians, carers and the general public.

Rare disease numbers;

  • Over 300 million people have a rare disease
  • 70% of rare disease start in childhood
  • 72% of rare diseases are genetic
  • A rare disease is rare when it affects less than 1,200 people
  • There are over 6,000 rare diseases

With these numbers in mind the lack of knowledge on the diseases are very low. The awareness day aim is to make people aware that just because you haven’t heard of some diseases, it does not mean that they dont exist or are any less significant.

Let’s “light up for rare” – rare disease day encourages us to light up buildings – our homes, monuments and other buildings to raise awareness on rare diseases and the challenges they face.