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Useful links

We have chosen some websites which we think are useful to anyone affected by cancer, particularly retinoblastoma. We are not responsible for the upkeep of information or accuracy on any of the websites listed below.
If you wish to comment on any of the links we have added or have not included please contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it.

Cancer

Macmillan

Macmillan Cancer Support provide practical, medical, emotional and financial support to people affected by cancer and also campaigns for better cancer care. 0808 808 00 00

Children's Cancer and Leukaemia Group (CCLG)

Responsible for the organisation of treatment and management of children with cancer in the UK, its main remit is the coordination of clinical trials. It also produces many useful booklets on children's cancer.

Aftercure

A booklet developed by the Children's Cancer and Leukaemia Group (CCLG) for those who had cancer as a child, looking into different aspects of life after cancer.

Cancer Research UK

This site has a wealth of information about different cancers and the charity's objectives and work itself.

Clic Sargent

The UK's largest children's cancer charity provides specialist nurses, doctors, play specialists, Homes from Home, social care, family support, youth services, holidays and grants. 0800 197 0068.

Bone Cancer Research Trust

BCRT is devoted to improving research into causes and treatment of primary bone cancer, and improving outcomes for patients. It provides research funding and information for patients and families.

Rarer Cancers Forum

A UK charity providing support for individuals with rare and less common cancers and to their families and friends. It also facilitates supportive networking between patients.

Childhood Cancer Parents Alliance (CCPA)

CCPA is made up of parent-run organisations with common aims of working together to support children with cancer. CHECT is a member of CCPA which is the UK member of the International Confederation of Childhood Cancer Parent Organisations (ICCCPO).

International Confederation of Childhood Cancer Parent Organizations

ICCCPO is a worldwide network of organisations of parents of children with cancer.

Cure Search - Children's Oncology Group COG

Cure Search's mission is to cure and prevent childhood and adolescent cancer through scientific discovery and compassionate care.

Camp Simcha

Improving the quality of life for Jewish children with cancer and other life threatening illnesses. It provides support to the child and family and also provides unforgettable experiences.

Further reading

This link takes you to a page about the long term follow-up guidelines for survivors of childhood, adolescent and young adult cancers. They were developed as a collaborative effort of the nursing discipline and the late effects committee.
The purpose of these guidelines is to provide recommendations for screening and management of late effects that may potentially arise as a result of therapeutic exposures used during treatment for paediatric malignancies.
There is a link on this page to the guidelines however we recommend you review these with the assistance of a healthcare professional knowledgeable about the long-term follow up care for survivors of childhood, adolescent and young adult cancers.

Visual Impairment

Action for Blind People

A national charity with local reach,providing practical help and support to blind and partially sighted people of all ages.

Calibre

Calibre Audio Library is a national charity providing a subscription-free service of unabridged audio books for adults and children with sight problems, dyslexia or other disabilities, who cannot read print.

Clear Vision

A UK postal lending library of mainstream children's books with added braille. Our books all have braille (or Moon), print and pictures, making them suitable for visually-impaired and sighted children and adults to share.

Living Paintings

A free library of Touch to See books bringing to life the visual world for blind and partially sighted people.

Look

Supporting parents and carers of children with a visual impairment.

National Blind Children's Society

The key UK agency supporting children and young people with visual impairment. Our focus is on newly diagnosed babies and children and their families, providing holistic support until completion of their full-time education.

Royal Blind

Services for VI children and adults in Scotland

Royal National Institute of Blind People (RNIB)

The leading charity offering information, support and advice to almost two million people with sight loss.

Sightline

The directory for local services aimed at helping blind or partially sighted people.

VICTA

Supports blind and partially sighted children, young people and their families across the UK.  If you are the parent of a blind or partially sighted child or young person, or you are visually impaired yourself and under the age of 29, then VICTA can help.

VI Scotland

Support children with visual impairment and their parents that live in Scotland.

Visibility

Provides support services to visually impaired children and adults in Scotland.

 

Retinoblastoma (Rb)

We have chosen some websites which we think are useful to anyone affected by cancer, particularly retinoblastoma. We are not responsible for the upkeep of information or accuracy on any of the websites listed below.
If you wish to comment on any of the links we have added or have not included please contact us at This e-mail address is being protected from spambots. You need JavaScript enabled to view it.
The links below are for different retinoblastoma organisations and charities. Please be aware that the numbers of children affected by retinoblastoma vary in each country and treatment protocols also differ. We would like you to be aware of the following points.
  • Retinoblastoma affects children from all races and occurs in both genders equally.
  • In the developed world, retinoblastoma can be cured successfully using a range of treatments and 98% of children will survive retinoblastoma. Most children in the developed world are diagnosed at a stage when the cancer is contained within the eye.
  • Due to a lack of awareness of eye cancer, late diagnosis and poor access to treatment, children in developing countries are often diagnosed at an advanced stage so the disease can be fatal.

Verity's Retinoblastoma Page

This site was made by a Chect member, Simon Clarkson. It show's the story (with pictures) of Verity's enucleation after being diagnosed with retinoblastoma. For any parents who are worried or unsure about the enucleation process this site can put your mind at rest. The site also contains information about how Verity's parents help her to care for her artificial eye and how they told Verity's two older siblings about the diagnosis and enucleation.

Daisy's Eye Cancer Fund

'Life and sight for every child'
Daisy's Eye Cancer Fund is a registered charity in England, a special fund at SickKids Foundation (the Hospital for Sick Children), Canada, and a registered NGO in Kenya.
Daisy's Eye Cancer Fund is the world's only retinoblastoma charity taking a global approach to the needs of children affected by this cancer. With a particular focus on developing countries, they are committed to improving care for all children with retinoblastoma. Their goal is to develop sustainable, locally managed diagnosis and treatment programs in under-served regions of the world so that, one day soon, no child will face death from this entirely treatable cancer due to lack of awareness or resources.
The organisation is named in honour of a brave school girl from Devon, England and driven by the memory of another valiant little girl from Africa.

Retinoblastoma International (RBI)

'Fighting children's eye cancer'
RBI is a non profit organisation founded in LA in 1998.  Since then RBI has been committed to supporting education, clinical care, research, early diagnosis and awareness. Their website has a section called 'Physicians and other resources' which is useful if you do not live within the UK. There is also a 'Children's stories' section of the website.

Retinostop

Retinostop is a French charity which supports families and facilitates parents meetings, supports research and helps to equip treatment and treatment centres. They promote early diagnosis amongst health professionals and government administrations.
They produce a booklet for children about a girl called Mirabelle and her cat Tino who both need artificial eyes made for them.
For the English version visit www.retinostop.org/english/association.html

Eye Can - Childhood Eye Cancer Foundation (Israel)

Eye Can supports children and families affected by retinoblastoma treated in Israel. They work with families from all backgrounds and religions Jewish, Muslim and Christian from Israel and the surrounding territories. In addition to providing support they raise awareness and enable further research into retinoblastoma.

The Canadian Retinoblastoma Society (CRBS)

CRBS is a charitable organisation which supports Canadians affected by retinoblastoma. It also works to raise awareness through education and also provides an advocacy service.

Eye Cancer Network: Ocular oncology; diseases, treatment and research

An educational website about the diagnosis and treatment of eye tumours. Find eye tumour doctors, eye tumour information and support (for eye tumour patients and their families).
An American website, supported by The Eye Care Foundation, that is concerned with all forms of eye cancer but has a link to Retinoblastoma on the home page. The information is simple but informative; it is interesting to look at Retinoblastoma alongside other forms of eye cancer.

Genetics

Genetic Alliance UK

The Genetic Alliance UK is a national charity of patient organisations, supporting those affected by a genetic condition.
The Childhood Eye Cancer Trust is a member of the Genetic Alliance UK

Retinoblastoma Genetics Screening Unit

The Retinoblastoma Genetics Screening Unit at Barts and the London NHS Trust has a website. This website has information about the type of testing they do. It also includes detailed information about genetics and a useful glossary of terms. This is a website that you, your GP, your local genetic counsellor and your ophthalmologist may find useful.