Associations, societies and reference networks

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INTERNATIONAL HISTIOCYTOSIS ORGANISATIONS

ARGENTINA
Asociación Argentina de Histocitosis (A.A.H)
info@aah.org.ar | www.aah.org.ar Ciudad Autonoma de Buenos Aires, Argentina

INTERNATIONAL HISTIOCYTOSIS ORGANISATIONSBELGIUM
LCH Belgium

Een onafhankelijke patiëntenvereniging voor kinderen en volwassenen met de ziekte
Langerhanscelhistiocytose info@lch.be www.lch.be

INTERNATIONAL HISTIOCYTOSIS ORGANISATIONSCANADA

Histiocytosis Association of Canada
Histiocytosis Association of Canada,
Box 29095, Okanagan Mission RPO, Kelowna, B.C., V1W 4A7 Canada
Phone: 250-764-6104 Email: histio.canada@shaw.ca
www.histioctosis.ca

FRANCE
L’Association Histiocytose France 01 60 66 93 77 | www.histiocytose.org France

GERMANY
Histiozytose Hilfe e.v. www.histiozytose.org Germany German Patient Association for Histiocytosis

INTERNATIONAL HISTIOCYTOSIS ORGANISATIONSGREECE
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
www.histioartemis.gr

INTERNATIONAL HISTIOCYTOSIS ORGANISATIONSNikolas 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
www.niksym.org

ISRAEL
Histio Israel smith01@netvision.net.il | www.histioisrael.org Israel

ITALY
Associazione Italiana Istiocitosi (AIRI) 041-5340721 | sede@istiocitosi.org | www.istiocitosi.org Italy

JAPAN
LCH Patient Association – Japan http://lch-friends.org/ Japan

NETHERLANDS
Stichting Langerhans Cel Histiocytose www.histio.nl Netherlands

SPAIN
Asociacion Espanola contra la Histiocitosis (ACHE) www.histiocitosis.org Spain

SWEDEN
Foraldraforeningen for barn med Histiocytos 0733507572 | info@histiocytos.se | www.histiocytos.se
Sweden

USA
INTERNATIONAL HISTIOCYTOSIS ORGANISATIONSHistiocytosis 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 www.histio.org

Histiocyte SocietyHistiocyte 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 www.histiocytesociety.org

European HistioEUROPE
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.
www.eurohistio.net

UK

CCLG (Children’s Cancer and Leukaemia Group)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)
www.cclg.org.uk
http://www.cclg.org.uk/family-focus/tips-on-coping

GLOBAL ALLIANCE
Erdheim Chester
www.erdheim-chester.org
An organization comprised of ECD patients and their caregivers from around the world. Their mission is to provide support to ECD patients and their loved ones, raise awareness of ECD, and promote research that will help those affected by ECD.

support@erdheim-chester.org | www.erdheim-chester.org

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