Today, Rare Disease Day 2017, NeuronUP would like to take this opportunity to give voice to 350 million people worldwide who suffer from a rare disease.
What is a rare disease?
When speaking of a rare disease, we are referring to those diseases which have a low prevalence in the population, in particular, any disease affecting less than 5 people per 10,000 individuals in the European Union.
Fucosidosis, calcinosis, PANDAS, sarcoidosis or single ventricle defects are just five examples of the almost 7.000 different types of rare diseases that exist today.
Do rare diseases affect only a small number of people?
Quite the opposite. According to the World Health Organization (WHO), they affect 6% to 8% of the world population.
Which are some common traits of rare diseases?
- They are often chronic and degenerative.
- 65% of these conditions are severe and debilitating.
- They have an early onset: 2 out of 3 rare diseases appear before the age of 2.
- They cause chronic pain in one patient out of five.
- Half of the cases develop motor, sensory, or intellectual deficits.
- They result in disability or loss of autonomy in one case out of three.
- They are life-threatening in half of the cases: rare diseases are responsible for 35% of deaths in the first year of life, 10% between the ages of 1 and 5, and 12% between the ages of 5 and 15.
What do people with rare diseases require?
The Spanish Federation for Rare Diseases (FEDER) explains that one of the most important problems experienced by people who suffer from a rare disease is the difficulty in obtaining an accurate diagnosis due to three main factors: “Unfamiliarity with these conditions; difficulty accessing the information needed; and difficulty finding professionals and specialized centers.”
Taking this problem into account, FEDER asks competent authorities to increase those measures necessary to ensure access to diagnosis, as well as medical attention and the promotion of research. In this regard, FEDER considers research to be “the greatest hope” for those suffering from rare diseases.
Today is Rare Disease Day, let us not turn it into Invisible Disease Day.
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