AOP Health is committed to serving people with rare diseases and in critical care. Focusing on the special needs of these patients, we investigate, develop and provide therapies worldwide.
Definition & Facts
What exactly are rare diseases?
Also known as orphan diseases (orphan = one without parents; rare = seldom). Whether a disease is defined as a rare disease depends on the frequency of its occurrence in the population. However, from the global point of view the definition is not consistent. Thus, in Europe those diseases that occur in less than 5 per 10,000 residents are defined as rare diseases.
In Europe about 30 million persons are affected by one of 6000 known rare diseases. 80% of rare diseases are attributed to a genetic cause. The remaining 20% can be attributed to infections (bacterial or viral), allergies, and environmental factors.
5 / 10.000 residents
EU
7.5 / 10.000 residents
USA
4 / 10.000 residents
Japan
1 / 10.000 residents
Australia
Subtitles available
The role of genetics.
Nearly all genetic disorders are rare diseases, but not all rare diseases are caused by genetic factors. Rare diseases include, for instance, some very rare infectious diseases, rare forms of autoimmune disorders, and even rare cancers. Most causes of rare diseases have not been explained yet. For many diseases the first symptoms may occur shortly after birth or in early childhood. In around 50% the first symptoms occur in adulthood.
01
Mostly children
Around half of the diseases occur in children; nearly all are caused by genetic factors
02
Many are unknown
Many rare diseases are nearly unknown; very few specialists exist for these
03
Lengthy Diagnosis
The pathway to the correct diagnosis is tedious and frequently spans a period of several years
04
Life-threatening
Many rare diseases are life-threatening or very burdensome.
05
37%
About 37% have a reduced life expectancy, depending on the severity of the disease.
06
26%
About 26% of the patients die before they reach the age of five years.
07
6,000+
There are more than 6,000 Known Rare Diseases.
08
95%
Treatments are lacking for 95% Of Rare Diseases. Quite often patients have to deal with exceptional bureaucratic hurdles such as bearing the costs of their treatment themselves.
Facts.
A side fact worth knowing: Since 2008 the28th of Februaryis known as the Rare Disease Day.
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