About rare diseases:

Rare diseases are the diseases that affect 1 person in every 100,000 people The are important because: > They are chronic, progressive and usually affect the quality of life. > Rare diseases cause disability, and cause loss of the patients’ autonomy. > High levels of pain and suffering for patients and their families. > Lack of effective treatment > There are between 6,000 to 8,000 rare diseases. > 75% of the affected are children. > 30% of patients with rare diseases die before the age of five. > 80% of rare diseases have genetic background and the rest are due to injury, infection and allergies, or environmental reasons – Source Sheikh Hamdan Award for Medical Sciences