Eight Facts About Rare Diseases

There is a distinct lack of information surrounding rare diseases, but just in time for Rare Disease Day, here are some facts that can help spread knowledge about the problems that plague sufferers all over the world.

  1. Eighty percent of rare diseases have genetic components, while the remaining rare diseases are caused by viral or bacterial infections, environmental causes, allergic reactions, or are degenerative or proliferative.
  2. Fifty percent of rare diseases affect children, including pediatric cancers.
  3. Due to a variety of reasons, including having generalized symptoms that can vary from case to case and patient to patient, rare diseases often have a delayed diagnosis that results in premature death for the patient.
  4. Very few cures for rare diseases are FDA-approved, while others are very expensive and difficult to access creating heavy financial burdens for patients and their families.
  5. The Rare Disease Day campaign raises awareness amongst the general public, policy makers, public authorities, industry representatives, researchers and health professionals.
  6. A rare disease is when fewer than 200,000 Americans are affected by it at any time, or fewer than one in 2,000 in Europe.
  7. Research brings about a chance for faster, more accurate diagnoses and cures.
  8. Advocacy for rare disease has helped to make a difference and raise funds.

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