Macmillan
Macmillan provides practical, medical and financial support for families and promotes and campaigns for better cancer care.
Macmillan also helps patients and their families with LCH and has a range of booklets and leaflets available (including information on LCH and chemotherapy).
www.macmillan.org.uk
Ask Macmillan: +44 808 808 00 00
CLIC Sargent
CLIC Sargent is a UK cancer charity for children and young people (up to the age of 25 years), and their families. They provide clinical, practical, financial and emotional support and aims to help the whole family deal with the impact of the disease.
Free Child Cancer Helpline:
+44 800 197 0068 9am-5pm (UK)
www.clicsargent.org.uk
Contact a Family (CAF) Personal Action Support Network
CAF bring families together so they can support each other, although CAF are not a Histiocytosis specific advice service, they do provide general information, advice and support and they campaign to improve family circumstances. If there is not a Histio specific group near you, please access their Personal Action Network (PAN) support groups they have 1500 groups on their database with 200 shown on their map emap and 600 on their network.
If you would like to find a support group close to you or for more information, follow the links to:
Family Fund
http://www.familyfund.org.uk/Carepages
http://www.familyfund.org.uk/Carepages websites are free patient blogs that connect family and friends during a health challenge.
Caringbridge provides free websites that connect family and friends during a serious health event. You can share health updates, and receive messages of support.
CancerCare
The therapeutic support and information services we offer can help individuals and their families come to terms with and manage the challenges of a serious illness.
Teenage Cancer Trust
Our vision is a future where young people’s lives don’t stop because they have cancer. We make sure they’re treated as young people first, cancer patients second and everything we do aims to improve their quality of life and chances of survival.
Sibs
Sibs is the UK charity representing the needs of siblings of disabled people. Siblings have a lifelong need for information, they often experience social and emotional isolation, and have to cope with difficult situations.
Scope Services directory
https://www.scope.org.uk/services/
Citizens Advice Bureau
Can advise on employment issues.
Kids Health
Website about children and parenting offering support and advice on caring for seriously ill children. Look at Tough Topics in the Parenting section.
www.kidshealth.org.uk
BACP
British Association for Counselling and Psychotherapy can help to find a private therapist in your area.
www.bacp.co.uk
Relate
Counselling, support and information for all relationships.
Institute of Fundraising
http://www.institute-of-fundraising.org.uk/guidance/about-fundraising/
Health & Safety Executive
http://www.hse.gov.uk/risk/index.htm
Food Standards Agency
http://www.food.gov.uk/business-industry/guidancenotes/#.U85lzssg9jo
Information Commissioners Office
Gambling Commission
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