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Useful Links

16,000 people diagnosed with a brain tumour every year

We understand only too well that when you or a loved one is diagnosed with a brain tumour you are desperate for information.  The internet is full of information - some reliable, some misleading!  Here are some sites that we are aware of which may help you in your quest for knowledge.  We have divided them into sections to help you find what you are looking for.  Please contact us if you find other helpful sites so that we can include them too, or let us know if any of this information is out-of-date.

Brain Tumour Research Group Members


Ali's Dream

Raises funds for research into discovering the causes, advancing treatments and finding a cure for childhood brain tumours

Anna's Hope
Assist in the rehabilitation of children and young people who have suffered from a brain tumour or who have had brain surgery and support the funding of research into the causes, treatment and cure of childhood brain tumours.

Astro Brain Tumour Fund
Raises money for research into low-grade gliomas and provides support to sufferers and their carers.

Brain & Spine Foundation
A national organisation, set up to develop research, education and information programmes for people affected by disorders of the brain and spine.  They provide a helpline staffed by neuro-nurses and a useful glossary of definitions of medical and technical words and procedures. Copies of the Brain and Spine Information Booklets can be obtained via the help-line or downloaded from the website.

Brain Tumour Research and Support Across Yorkshire
Brain tumour research and support for children and adults throughout Yorkshire.

Brain Tumour Research Campaign

Acts in association with the Way Ahead charity to raise public awareness and fund research into brain tumours at Charing Cross Hospital.

brainstrust
Explores brain tumour treatment worldwide and is developing a UK-wide strategy dedicated to improving proactive care for brain tumour sufferers.  This helpful website provides a useful ‘who can help’ guide to show you which way to turn if you or your child have been diagnosed with a brain tumour and this is available to download free from the website.  Brainstrust also supports patients and carers at the point of diagnosis, or at any point on this hard journey via a useful helpline, giving practical advice about what you can do to take control of the situation.  Advice is geared to each individual case and is based on a wealth of experience working with the brain tumour community, both in the UK and internationally.  Please call 01983 292405 or email hq@brainstrust.org.uk

Brainwaves NI
A Northern Ireland based support group for brain tumour sufferers, children and adults, their families and their carers.

Charlie's Challenge
Funds research into children’s brain tumours.

Children's Brain Tumour Research Centre
Brings together a multi-disciplinary team of leading healthcare professionals and researchers – all committed to improving our understanding of childhood brain tumours.

Levi's Star
Supporting children with brain tumours.  It is also our wish to raise awareness about the symptoms of brain tumours, a truly devastating disease and support established research projects.

Thorne Mason Trust
Help people in Pembrokeshire who are in any way affected by cancer and fund research into glioblastoma multiforme brain tumours

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Children's Brain Tumour & Cancer Websites

Adele's Memorial Fund
This charity based in Redcar raises funds to provide grants or special treats for terminally ill children or young people.

Ali's Dream

Raises funds for research into discovering the causes, advancing treatments and finding a cure for childhood brain tumours.

Anna's Hope
Assists in the rehabilitation of children and young people who have suffered from a brain tumour or who have had brain surgery and supports the funding of research into the causes, treatment and cure of childhood brain tumours.

Charlie's Challenge

Funds research into children's brain tumours.

Childhood Cancer International
A worldwide network of organisations of parents of children with cancer.  Its focus is on the cooperation and sharing of information and experiences between parent groups around the world.

Children's Brain Tumour Research Centre
The CBTRC brings together a multi-disciplinary team of leading healthcare professionals and researchers - all committed to improving our understanding of childhood brain tumours.

Children's Cancer and Leukaemia Group
The CCLG is a national professional body responsible for the organisation of the treatment and management of children with cancer in the UK.  The Group's main remit is the coordination of national and international clinical trials, including biological studies.  Other areas of activity include national cancer registration and provision of information for patients and families.

Children Today
Children Today raise funds to provide special equipment for children and young people with disabilities throughout the UK.  Their aim is to ensure that every disabled child and young person fulfils their potential and leads an active childhood.

Clic Sargent
Cares for children and young people with cancer and their families in hospital and the community.

Clowns in the Sky
Clowns in the Sky is dedicated to the research and treatment of childhood brain tumours and to the welfare of affected children and their families.

Contact a Family
The only UK charity providing support and advice to parents, whatever the medical condition of their child.

Dreamflight
Dreamflight is a registered UK charity whose purpose is to take seriously ill and disabled children on their `Holiday of a Lifetime' to the theme parks of Central Florida.  The basic criteria is that the children are between the ages of 8 and 14 and are currently, or have been, seriously ill.

Ellie's Fund Brain Tumour Trust
Help families living in East Anglia who have a child with cancer, or a brain tumour, by providing financial support and information. They also fund research into brain tumours.

Family Fund
The Family Fund gives grants to lower income families with disabled children for things that make life easier and more enjoyable.  It is the largest charitable sector grant-maker to families, giving around £29 million to about 48,000 families each year.

Happy Days Children's Charity
Provides holidays and day trips for children who have disabilities or life limiting conditions or who have been abused.  For children who are resident in the United Kingdom and are between the ages of three and seventeen.  Aim to develop the children physically, mentally and spiritually.

James Crofts Hope Foundation

This Australian foundation is committed to providing assistance to people diagnosed with brain tumours and their families, and also to the advancement of the treatment and research of these conditions.

Jessie's Fund
A UK Charity helping seriously ill and disabled children by using music as a form of communication and for therapy.

Kayliegh's Trust
Set up to highlight Kayleigh's fight against DIPG and share experiences to help others. 

Levi's Star
Supporting children with brain tumours.  It is also our wish to raise awareness about the symptoms of brain tumours, a truly devastating disease and support established research projects.

Naseem's Manx Brain Tumour Charity
Supporting Isle of Man residents who are suffering with a brain tumour by way of giving them financial support and providing the latest information about brain tumours.

National Alliance of Childhood Cancer Parent Organisations
The National Alliance of Childhood Cancer Parent Organisations (NACCPO) is made up of parent run organisations that have common aims of working together to support children and young adults with cancer.

Over The Wall
Offers free residential camps for children and young people who are affected by cancer and other serious illnesses.  Also provides sessions for siblings.

Rainbow Trust
This organisation provides practical and emotional support to families who have a child with a life-threatening or terminal illness.

Rhiley's Smile
Raising awareness and funds to find a cure in memory of Rhiley, who sadly lost her battle with AT/RT.

Round Table Children's Wish
RTCW helps make wishes come true for children with life-threatening illnesses.

Royal College of General Practitioners - Brain Tumours in Children toolkit
This toolkit brings together a range of reliable and user-friendly resources including detailed decision support tools for clinicians. It is primarily aimed at healthcare professionals but also contains information and sources of support for patients and carers. 

Sam's Send-A-Message
Raises funds to send out gift packages to children diagnosed with a brain tumour, as well as raising awareness for paediatric brain tumours. 

Sick Children's Trust

Provides high quality `home from home' accommodation for families whose children are receiving hospital treatment for serious illness.

Starlight Children's Foundation

A registered charity that grants the wishes of seriously and terminally ill children between the ages of 4 and 18.  Children with cancer are eligible for a wish as long as they are able to choose and articulate for themselves and the child has not had a wish from any wish-granting organisation previously.  Also, children who have been off treatment for over two years are generally considered to be ineligible for a wish.

The Ethan Perkins Trust
This organisation based in Wales is committed to raising much needed funds for research into childhood brain tumours and in particular brain stem glioma projects including Diffuse Intrinsic Pontine Gliomas (dipg).

United Kingdom Childrens Cancer Study Group
UKCCSG aims to improve the management of cancer in children and to advance the knowledge and study of childhood malignancy.

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Teenager's Brain Tumour & Cancer Websites

Christopher Clarke Cancer Research Fund
Raises funds for research into brain tumours in teenagers and young people.

Over The Wall
Offers free residential camps for children and young people who are affected by cancer and other serious illnesses.  Also provides sessions for siblings.

Starlight Children's Foundation
A registered charity that grants the wishes of seriously and terminally ill children between the ages of 4 and 18.  Children with cancer are eligible for a wish as long as they are able to choose and articulate for themselves and the child has not had a wish from any wish-granting organisation previously.  Also, children who have been off treatment for over two years are generally considered to be ineligible for a wish.

Tanya’s Courage Trust

Offer financial help and  support to young people fighting cancer aged 16 to 25 in Cornwall, ranging from special day out, nice meal, new games to ease the boredom or financial assistance if that’s what’s needed most.

Youth Cancer Trust

Provides free holidays to young cancer patients between the ages of 14-30 attending any hospital in the UK or Irish Republic subject to approval from their doctor.  They are invited to spend a few days with other guests of a similar age and situation at Tracy Anne House in Bournemouth.  They can come in groups up to eight and bring a brother, sister or a friend.  The emphasis is on a relaxed, carefree and fun holiday, allowing a few days away from the hospitals.  The groups choose what activities they would like to do making this their special holiday.

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Other Brain Tumour Organisations

The Acoustic Neuroma and Meningioma Network
AMNET is a support group of Acousti Neuroma or Meningioma patients based at Addenbrookes Hospital, Cambridge.  It holds regular meetings, issues a newsletter and offers a range of booklets and information.

Alison Fracella Research Trust
Funds research, treatment and elimination of Glioblastoma brain tumours and provides patients with comprehensive information and support.

The Andrew McCartney Trust Fund for Brain Tumour Research

Raises funds for research through the sale of images taken by Andrew McCartney, a keen landscape photographer, before his death from a brain tumour.

The Association of British Neurologists
The ABN offers information for consultant neurologists, trainee neurologists and their patients.  It aims to improve the health and well-being of people with neurological disorders by advancing the knowledge and practice of neurology in the British Isles.

Astro Brain Tumour Fund

Astro Fund raises money for research into low-grade gliomas and provides support to sufferers and their carers. Please call 01485 572767 or email info@astrofund.org.uk 

Basic Charity
BASIC is a brain and spinal injury charity affiliated to the Greater Manchester Clinical Neuroscience Centre with useful information for brain tumour patients and their carers, as well as for patients recovering from severe brain injury.

Brain & Spine Foundation

A national organisation, set up to develop research, education and information programmes for people affected by disorders of the brain and spine.  They provide a helpline staffed by neuro-nurses and a useful glossary of definitions of medical and technical words and procedures. Copies of the Brain and Spine Information Booklets can be obtained via the help-line or downloaded from the website.

Brain Tumour Action

Provides information, support and counselling for brain tumour patients, their friends and families, including a telephone help-line staffed by Neuro-Oncology nurses and trained counsellors.  Leaflets can be downloaded free.  They also raise funds for brain tumour research.  In addition, Brain Tumour Action operates as a useful self-help news and discussion group for patients, carers and others affected by a brain tumour.

Brain Tumour Research Campaign

Acts in association with the Way Ahead charity to raise public awareness and fund research into brain tumours at Charing Cross Hospital. A Member Charity of Brain Tumour Research.

brainstrust
Explores brain tumour treatment worldwide and is developing a UK-wide strategy dedicated to improving proactive care for brain tumour sufferers.  This helpful website provides a useful `who can help' guide to show you which way to turn if you or your child have been diagnosed with a brain tumour and this is available to download free from the website.  Brainstrust also supports patients and carers at the point of diagnosis, or at any point on this hard journey via a useful helpline, giving practical advice about what you can do to take control of the situation.  Advice is geared to each individual case and is based on a wealth of experience working with the brain tumour community, both in the UK and internationally.  Please call 01983 292405 or email hq@brainstrust.org.uk. They are a Member Charity of Brain Tumour Research.

Brainwaves NI
A Northern Ireland based support group for brain tumour sufferers, children and adults, their families and carers. A Member Charity of Brain Tumour Research.

British Acoustic Neuroma Association

BANA is organised and administered by people affected by acoustic neuroma and exists for mutual support, information exchange and listening. 

BT Buddies
This website provides a forum, as well as information about types of brain tumour, treatment and stories of hope. they carry a list of global brain tumour organisations www.btbuddies.org.uk/links/87-brain-tumour-organisations-worldwide.html

BUPA
BUPA provides a useful factsheet on brain tumours.


The Epidermoid Brain Tumour Society
The society is administered by international members affected by the epidermoid brain tumour, and was organised for the purpose of giving information, support and to provide a connection with others. Our organisation consists of the newly diagnosed, the experienced patient with one or many craniotomies, and those who have not had surgery along with families, caregivers, and medical professionals. Although this tumour is benign, it has devastating results in the brain, with or without surgery. We hope to raise funds for research of benign tumours of the skull base.

Meningioma UK 

Offers support and information to anyone who has this kind of primary brain and spine tumour, and raises awareness of its often life-changing effects.

Neurological Alliance
The Neurological Alliance enables charities to work together to improve the quality of life for all those in the UK living with a neurological condition and has a directory of organisations which can provide individual support to people with a neurological condition.

NHS Choices
Find everything you need to know about medical conditions, symptoms, health tests, treatments, operations and services.

NICE Guidance for Brain Tumours
A patient guide to complement the NICE national guideline for health professionals.

Patient.co.uk
For comprehensive health information which includes cancer of the brain and brain tumours.  A leaflet which includes an excellent overview of the different types of brain tumour, information on symptoms, diagnosis and treatment is available to download.

Pituitary.org.uk
The Pituitary Foundation works to provide information and support to those living with pituitary disorders, including patients, their relatives, friends and carers.

The Ed Evans Foundation

In memory of 27 year old Ed Evans who passed away in 2007, this organisation is based in Wales, UK and raises funds for cancer and brain tumour charities.

The International Brain Tumour Alliance

The IBTA seeks to be an alliance of the support, advocacy and information groups for brain tumour patients and carers in different countries and also includes researchers, scientists, clinicians and allied health professionals who work in the area of brain tumours.

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General Cancer Information and Support Organisations

Cancer Active
Cancer active is an independent charity that aims to help people increase their personal odds of beating cancer.  To achieve this they believe in empowering people - to understand the possible causes and to build effective integrated therapy programmes, using well-researched complementary and alternative therapies, not merely orthodox ones.   The website provides lots of intelligent information.

Matthew's Friends

Matthew's Friends are a UK registered charity specialising exclusively in medical Ketogenic Dietary Therapies. They support patients, families and professionals by providing information, training, research and grants to develop Ketogenic services and support systems for drug resistant epilespy as well as other neurological and metabolic disorders and emerging cancer types.

Willow Foundation

Willow Foundation is the only UK charity supporting seriously ill 16-40 year olds to live their lives to the full by providing unique and positive Special Days. To date, they have provided nearly 10,000 Special Days to young adults living with life-threatening conditions such as cancer, motor neurone disease, cystic fibrosis and Huntington’s disease.

At a time of uncertainty, each unique Special Day is a positive focus away from diagnosis and treatment or marks recovery from illness. The planning anticipation and excitement of the day boosts confidence, provides inspiration to make every moment count and creates lasting memories.

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International Brain Tumour Information and Support Organisations

ABC2
Accelerate Brain Cancer Cure has a singular focus - to hasten the discovery of a cure for brain cancer.

Adult Brain Cancer Support Association

The ABCSA is located in South Australia and is focussed on giving support, encouragement, help and guidance to adults diagnosed with brain cancer, their families, friends and carers.

Alinoe

Alinoe (Association Lilloise de Neuro-Oncologie) is a patient-oriented organisation providing information and support to brain tumour patients and their families principally in the Lille area of northern France

American Brain Tumour Association
This organisation provides a lot of information on its website, but as the site is American, not all the information may apply to the UK.

Brain Life
An American site which provides a medical database drawing information from medical papers, journals etc, as well as information on experimental treatments and alternative therapies.

Brain Science Foundation
This American site is dedicated to finding a cure for meningioma and other types of primary brain tumour.  It has comprehensive information on the different types of brain tumour, as well as their symptoms and treatment options.

National Cancer Institute
This American website provides accurate, up-to-date information about many types of cancer, including brain tumours, information about clinical trials, resources for people dealing with cancer, and information for researchers and health professionals.

The Ben and Catherine Ivy Foundation
The objective of the US-based Ben and Catherine Ivy Foundation is to fund research that will offer brain tumour patients a wide choice of effective treatments that provide for a long term, high quality life.

Brain Surgery Information Centre
Provides comprehensive information about the brain and neurosurgery.

Brain Tumour Foundation of Canada
This is the major non-government brain tumour organisation in Canada and is dedicated to reaching every Canadian affected by a brain tumour through support, education, information and research.

 
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