INTERNATIONAL HISTIOCYTOSIS ORGANISATION
ARGENTINA
Asociación Argentina de Histocitosis (A.A.H)
info@aah.org.ar
www.aah.org.ar
Ciudad Autonoma de Buenos Aires,
Argentina
BELGIUM
LCH Belgium
Een onafhankelijke patiëntenvereniging voor kinderen en volwassenen met de ziekte
Langerhanscelhistiocytose
info@lch.be
www.lch.be
CANADA
Histiocytosis Association of Canada,
Box 29095,
Okanagan Mission RPO,
Kelowna, B.C.,
V1W 4A7
Canada
Phone: 250-764-6104
histio.canada@shaw.ca
www.histioctosis.ca
GREECE
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
FRANCE
L’Association Histiocytose France
01 60 66 93 77
www.histiocytose.org
GERMANY
Histiozytose Hilfe e.v.
www.histiozytose.org
Germany
German Patient Association for Histiocytosis
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
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
JAPAN
LCH Patient Association
http://lch-friends.org/
NETHERLANDS
Stichting Langerhans Cel Histiocytose
www.histio.nl
SPAIN
Asociacion Espanola contra la Histiocitosis (ACHE)
www.histiocitosis.org
SWEDEN
Foraldraforeningen for barn med Histiocytos
0733507572
info@histiocytos.se
www.histiocytos.se
USA
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
www.histio.org
USA
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
www.histiocytesociety.org
EUROPE
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
United Kingdom
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