In this article we explain what a rare disease is, highlighting its definition, the global impact and the challenges that patients face. Detailing statistics about their prevalence in various regions of the world and presenting the main characteristics of these diseases, such as delayed diagnosis, chronic pain and disability.
What is a rare disease?
A disease is considered rare when it affects a limited number of the total population, defined in Europe as fewer than 1 in every 2,000 citizens.
- Between 6% and 8% of the world’s population
- 3 million Spaniards
- 30 million Europeans
- 25 million North Americans
- 42 million Ibero-Americans
It is estimated that there are today between 5,000 and 7,000 rare diseases.
Characteristics of rare diseases
- Early onset in life: 2 out of 3 appear before the age of two.
- Chronic pain: 1 in 5 patients
- Impaired autonomy: 1 in 3 cases
- Life-threatening prognosis: a high number of premature deaths can be attributed to rare diseases.
Diagnosis of rare diseases
From the onset of the first symptoms to obtaining a diagnosis of a rare disease an average of 5 years elapses. While diagnosis is delayed:
- 46.5% receive no support or treatment
- 26.7% receive inadequate treatment
- 26.8% have seen their condition worsen
Healthcare for rare diseases
46.6% are not satisfied with the healthcare received.
Travel to seek diagnosis or treatment
50% of patients had to travel outside their province in recent years due to the disease.
Expenses
Each family allocates an average of €350 for expenses.
Discrimination
75% felt discriminated against on at least one occasion because of the disease.
Disability
70% of people with a rare disease have a disability certificate.
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“This article has been translated. Link to the original article in Spanish:”
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