INTERNATIONAL HISTIOCYTOSIS ORGANISATIONS
Asociación Argentina de Histocitosis (A.A.H)
firstname.lastname@example.org | www.aah.org.ar Ciudad Autonoma de Buenos Aires, Argentina
Een onafhankelijke patiëntenvereniging voor kinderen en volwassenen met de ziekte
Langerhanscelhistiocytose email@example.com www.lch.be
Histiocytosis Association of Canada
Histiocytosis Association of Canada,
Box 29095, Okanagan Mission RPO, Kelowna, B.C., V1W 4A7 Canada
Phone: 250-764-6104 Email: firstname.lastname@example.org
L'Association Histiocytose France 01 60 66 93 77 | www.histiocytose.org France
Histiozytose Hilfe e.v. www.histiozytose.org Germany German Patient Association for Histiocytosis
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
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
Histio Israel email@example.com | www.histioisrael.org Israel
Associazione Italiana Istiocitosi (AIRI) 041-5340721 | firstname.lastname@example.org | www.istiocitosi.org Italy
LCH Patient Association – Japan http://lch-friends.org/ Japan
Stichting Langerhans Cel Histiocytose www.histio.nl Netherlands
Asociacion Espanola contra la Histiocitosis (ACHE) www.histiocitosis.org Spain
Foraldraforeningen for barn med Histiocytos 0733507572 | email@example.com | www.histiocytos.se
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
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
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)
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.
firstname.lastname@example.org | www.erdheim-chester.org
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