What does Rare Disease mean?
If we want to define the rare disease, we can say that it varies according to the countries. There is no single definition valid all over the world.
In the USA, the Food & Drug Administration (FDA) defines the rare disease as a condition that affects less than 200,000 people; In Japan, the Medicines Law defines a condition that does not affect more than 50,000 people in the country, while the European Union defines it as life-threatening or chronically debilitating conditions with an incidence of less than 5 per 10,000.
According to the World Health Organization, a rare disease is one that affects up to 6.5 out of every 10,000 people.
In our country, the number of patients suffering from rare diseases due to some hereditary reasons, especially consanguineous marriages, is quite high.
Rare Diseases in the World
This rate is lower in Turkey compared to the EU and the USA. It represents an incidence of roughly 0.1 to 9 per 100,000 people in a given area.
However, the incidence of rare diseases resulting from consanguineous marriages is higher in Turkey. Less than 1% of marriages in North America and Europe are consanguineous, while 10% of marriages in East and West Africa and South America are consanguineous.
In Turkey, according to the 2016 results of the Family Structure Survey of the Turkish Statistical Institute (2017); When examining whether the individuals aged 15 and over who have experienced marriage are related to their spouses, it was determined that 23.2% of the individuals were related to their spouses. Therefore, it is thought that approximately 5-7 million people in Turkey may be affected by rare diseases.
Rare Disease in Our Country
This rate is lower in Turkey compared to the EU and the USA. It represents an incidence of roughly 0.1 to 9 per 100,000 people in a given area.
However, the incidence of rare diseases resulting from consanguineous marriages is higher in Turkey. Less than 1% of marriages in North America and Europe are consanguineous, while 10% of marriages in East and West Africa and South America are consanguineous.
In Turkey, according to the 2016 results of the Family Structure Survey of the Turkish Statistical Institute (2017); When examining whether the individuals aged 15 and over who have experienced marriage are related to their spouses, it was determined that 23.2% of the individuals were related to their spouses. Therefore, it is thought that approximately 5-7 million people in Turkey may be affected by rare diseases.
