What is the prevalence of Kallmann Syndrome?

How many people does Kallmann Syndrome affect? Does it have the same prevalence in men and women? And in the different countries?


Kallmann Syndrome is a rare genetic disorder characterized by the combination of delayed or absent puberty and an impaired sense of smell. It primarily affects males, with a prevalence estimated to be around 1 in 10,000 to 1 in 50,000 males. However, it can also occur in females, although less frequently. The exact prevalence of Kallmann Syndrome is challenging to determine due to underdiagnosis and the wide range of symptoms and severity among affected individuals.

The syndrome is caused by mutations in several genes involved in the development and migration of neurons that produce hormones responsible for puberty and the sense of smell. These genetic mutations disrupt the normal development of the hypothalamus and olfactory system.

Early diagnosis and treatment are crucial for individuals with Kallmann Syndrome to address the delayed puberty and associated fertility issues. Hormone replacement therapy can help induce puberty and promote sexual development. Additionally, assisted reproductive technologies may be necessary for individuals with fertility problems.

While Kallmann Syndrome is a rare condition, raising awareness among healthcare professionals and the general public is essential to ensure timely diagnosis and appropriate management for affected individuals.

by Diseasemaps

The condition has a low prevalence, estimated as being between 1 in 4,000 and 1 in 10,000 for male HH cases overall and 1 in 50,000 for Kallmann syndrome. It is three to five times more common in males than females. Though whether this is a true sex imbalance or a reflection on how difficult KS / HH is to diagnose correctly, especially in females, has yet to be fully established. Finnish population at 1 in 48,000, with a sex distinction of 1 in 30,000 for males and 1 in 125,000 for females.

6/11/17 by Remo 2050

Hypogonadotropic hypogonadism is estimated to affect between 1 in 4,000 and 1 in 10,000 males, of which about a half are Kallmann syndrome cases. A recent study in Finland put the incidence at 1 in 48,000 people overall, with 1 in 30,000 for males and 1 in 125,000 for females. The true figure is unknown but is probably under diagnosed in females.

11/30/17 by Neil Smith 4395

Estimates vary, but it is roughly 1 in 100,000 men and even more rare for women.

12/5/17 by Aaron Davis 4150

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