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Raising Awareness for Rare Diseases

This month we want to raise awareness for rare diseases. A rare disease is any condition that affects a small percentage (roughly 4.6%) of the population. Most rare diseases are genetic while others come from viral or bacterial infections. 70% of rare genetic disorders start in childhood.

The biggest challenge with rare diseases today is the lack of information and knowledge in treating and getting a correct diagnosis. Rare diseases are so uncommon that researchers and clinicians must stay connected when conducting international research. Multinational clinical trials can also help patients with research advancements.

Here are some facts on rare diseases:

  • 1:10 people suffer from a rare disease.
  • 50% affected are children.
  • There are approximately 7,000 rare diseases.
  • One of the most uncommon conditions is called: fibrodysplasia ossificans progressiva – this condition causes bones to form where they are not supposed to 80% of rare diseases are inherited.

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