Also Known As:

  • Histiocytosis X
  • Histiocytosis X Syndrome
  • LCH

Why is RareCan interested in Langerhans Cell Histiocytosis?

RareCan is working to accelerate research into Langerhans Cell Histiocytosis by making it easier for researchers to connect with people who have this rare form of disorder. You can help us do this by becoming a RareCan member and sharing information with us about your LCH diagnosis. We will then get in touch with you about any research opportunities that might be suitable for you.



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What is Langerhans Cell Histiocytosis (LCH)?

Langerhans Cell Histiocytosis is a rare disorder that starts in the LCH cells. These cells normally help the body to fight infection. LCH most commonly appears in the bones but can occur in many other parts of the body as well. It is not yet known whether LCH is a form of cancer or if it is a ‘cancer-like’ disease.

How rare is Langerhans Cell Histiocytosis?

Each year, LCH occurs in around 1 in 200,000 children under the age of 10 and in about 1 in 560,000 adults.

Who does Langerhans Cell Histiocytosis affect?

It usually affects children between the ages of 1 and 15 but it can also affect adults. 

Is Langerhans Cell Histiocytosis a type of cancer?

It is not yet known whether LCH is a form of cancer or if it is a ‘cancer-like’ disease.

Useful Links:

If you have Langerhans Cell Histiocytosis/Histiocytosis X/LCH and are looking for support, we recommend the following website:

Histio UK is a charity that dedicates itself to funding and promoting research into histiocytic diseases, including LCH.

Opportunities for Members with Langerhans Cell Histiocytosis


The RareCan BioResource

Donating your samples for medical research

Joining RareCan gives you the ability to donate your tissue samples to the BioResource for medical research. Please note that signing up to RareCan does not commit you to donating tissue and you can cancel your membership at any time. If you have Langerhans Cell Histiocytosis and would like to find out more, please click the button below.

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