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International Links, News and Events Concerning Histiocytic Diseases

Author(s): E. Schaefer, Created: 2010/10/10, Reviewed by: I. Astigarraga, J. Donadieu, L. Debar, last update: 2013/02/02

An International Community Dedicated to Research and Treatment

The Histiocyte Society, a nonprofit organization, 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 this disease.

Annual Meeting of the international Histiocyte Society, usually in October
The Histiocyte Society holds annual scientific meetings in various locations throughout the world. Proposals for research studies about histiocytosis, as well as the results of completed studies, are shared during the presentations at these meetings.
The Nikolas Symposia on Histiocytosis
The annual international conference of scientists, pathologists and clinicians coming together to search for the rational cure for the Histiocytoses. The Nikolas Symposium is hosted in Greece and funded by the Kontoyannis family in honour of Nikolas Kontoyannis who suffered from severe multi-system LCH.
Social economic burden and health-related quality of life in patients with rare diseases in Europe
The main aim of BURQOL-RD is to generate a model to quantify the socio-economic costs and Health Related Quality of Life (HRQOL) , of both patients and caregivers, for up to 10 rare diseases in different European countries, histiocytosis amongst others.
Erdheim-Chester Disease Global Alliance - a group of patients and their loved ones
The ECD Global Alliance is dedicated to awareness, support, education, and research related to Erdheim-Chester Disease. It is based in the USA and has international members.