Histiocytosis Association of Canada
Histiocytosis Association of Canada,
Box 29095, Okanagan Mission RPO, Kelowna, B.C., V1W 4A7 Canada
Phone: 250-764-6104

Artemis Association

The Artemis Association is a group of parents, patients, doctors and friends based in Greece. Its objectives include supporting patients and their families, encouraging and supporting research and keeping up to date with the latest treatments.


Phone: +30 210 45 20 453

Nikolas Symposium
The Nikolas Symposium is an annual scientific conference hosted in Greece and funded by the Kontoyannis family in honour of Nikolas Kontoyannis who had severe multi-system LCH as a child and lives with the late effects of the disease. The symposium
brings together scientists, pathologists and clinicians in search of a rational cure for the Histiocytic disorders.


Phone: +30 210 45 20 453

LCH Belgium

Een onafhankelijke patiëntenvereniging voor
kinderen en volwassenen met de ziekte

Histiocytosis Association (HA)


The HA is based in the United States and is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

Phone: +1 856 589 6606

Histiocyte Society
The Histiocyte Society is a group of more than 200 physicians and scientists from around the world committed to improving the lives of patients with histiocytic disorders by conducting clinical and laboratory research into the causes and treatment of these diseases.


Phone: +1 856 589 6606

Histio Net
This is a reference network for Langerhans Cell Histiocytosis and associated syndromes. Several partners – medical experts in the field of care for Langerhans Cell Histiocytosis (LCH), patients and support groups from the European Union (EU) and from outside the EU – cooperates to share and disseminate knowledge and experience. Their objective is to participate in improving care of patients with LCH and other rare diseases belonging to the same ‘family’ of diseases.

CCLG (Children’s Cancer and Leukaemia Group)
CCLG is the UK professional body for those working in the area of childhood cancer.
LCH is usually treated by this group of clinicians and the CCLG hosts a Histiocytosis Interest Group which has specific expertise in LCH. The CCLG produces a variety of leaflets (e.g. ‘A Guide to Clinical Trials – For Parents and Young People’, ‘How to help brothers and sisters’), all of which are available online and in hard copy. The CCLG website has numerous links to other sites that may be useful.


Phone: +44 116 249 4460 (Main Office)

Erdheim Chester


International Rare Disorders registry



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