Useful Links

www.clicsargent.org.uk

CLIC Sargent is the UK’s leading childrens cancer charity. If your child has to have chemotherapy or radiotherapy they can help you with a number of things; During treatment, in hospital and at home and after treatment.

For more information, WEBSITE

Child Cancer Helpline
You can call the Child Cancer Helpline on 0800 197 0068
Monday to Friday
9 to 5pm
Email: helpline@clicsargent.org.uk
www.familyfund.org.uk

Family Fund give grants for disabled children for things that make life easier; such as driving lessons, washing machines etc.
http://www.tcf.org.uk TCF is a charitable organisation of bereaved parents, siblings and grandparents dedicated to the support and care of other bereaved parents, siblings and grandparents who have suffered the death of a child/children.
www.histio.org

The Histiocytosis Association of America.
www.pituitary.org.uk

The Pituitary Foundation is a national UK charity, which is working to provide information and support to thos living with pituitary disorders such as Diabetes Insipidus. 0845 450 0375
www.facebook.com

There is a group on this social network site, started by Zara Leadbeater (her neice had LCH), with over 400 members. You can contact people affected by LCH and share your experiences. It's free to join and the group is called 'Help find a cure for Histicytosis'. The Histiocytosis Association of America have a group on facebook too.
www.eurordis.org
European Organisation for Rare Diseases

www.raredisease.org.uk
National Alliance for people with rare diseases. Their aim is to develop a national plan for rare diseases in the UK
www.anthonynolan.org.uk -

www.macmillan.org.uk

Macmillan Cancer Support provides practical, medical, emotional and financial support for people with cancer.
www.blood.co.uk
The National Blood Service web site, do something amazing today - give blood and save a life.
www.organdonation.nhs.uk

To join the Organ Donor Register, please go to their website or call 0300 123 3 23 or you can text SAVE to 84118
www.youtube.com

There are many videos on youtube, explaining the basics about Langerhans Cell Histiocytosis. There are a group of seven videos by Ken McClain (Texas Childrens Hospital) , posted by Jeff Toughill - president of the Histiocytosis Association of America; If you have time please take a look, they are a great way of learning about this disease.

http://www.caringbridge.org - free personalised websites that support and connect loved ones during critical illness. You can set up an on-line diary during treatment to keep family and friends updated. It is an American site, but you can use it from the UK - take a look, it is simple to use.