Next Thursday, February 28th, is Rare Disease Day 2019. NeuronUP would like to take this opportunity to give visibility to those who suffer from rare diseases throughout the week. Today, we are providing the most significant data regarding rare diseases.
What are rare diseases?
Any disease having a low prevalence in the population is considered rare. In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people.
- Between 6% and 8% of the world population
- 3 million in Spain
- 30 million in Europe
- 25 million in North America
- 42 million in South America
It is estimated that between 5,000 and 7,000 distinct rare diseases exist today.
Characteristics of rare diseases
- Early onset: 2 out of 3 rare diseases appear before the age of 2.
- Chronic pain: 1 patient out of 5.
- Disability or loss of autonomy: 1 case out of 3.
- Life-threatening: rare diseases are responsible for a high number of premature deaths.
Diagnosis
On average, 5 years elapse from onset of first symptoms to correct diagnosis. In the meantime, Spanish patients record the following statistics:
- 5% do not receive any support or treatment
- 7% receive inadequate treatment
- And 26.8% have their illness worsen
Healthcare
46.6% of Spanish patients are not satisfied with the medical attention they receive.
Traveling for diagnosis or treatment
50% of Spanish patients had to travel in recent years out of their province due to the disease.
Expenses
Each family in Spain spends an average of €350 on expenses related to the disease.
Discrimination
75% of Spanish patients experienced discrimination on at least one occasion due to illness.
Disability
70% of people living in Spain with a rare disease have access to disability benefits.
