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Neuroblastoma Menu
 About Neuroblastoma
Organisations / Support Groups
Resources for Parents and the Public
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Neuroblastoma is one of the most common solid tumours of early childhood usually found in babies or young children. The disease originates in the adrenal medulla or other sites of sympathetic nervous tissue. The most common site is the abdomen (near the
adrenal gland) but can also be found in the chest, neck, pelvis, or other sites. Most patients have widespread disease at diagnosis.
This page contains links to information specifically related to Neuroblastoma, other relevant resources are availible via the Main Menu of Children's Cancer Web.
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Children's Neuroblastoma Cancer Foundation A non-profit organization providing support, advocacy and funding medical research projects on neuroblastoma. CNCF is based in Bloomingdale, IL, the Web site includes information about the organisation, news, events, donations and resources.
Neuroblastoma Children's Cancer Society (USA) The NCCS is a non-profit organization dedicated to fund-raising, support, research, and advocacy for children with neuroblastoma and families. Members of the society are mainly parents or relatives of children diagnosed with neuroblastoma.
Neuroblastoma Society, The (UK) The Neuroblastoma Society is a charity offering parental support to families with children with neuroblastoma. The web site includes a downloadable booklet for parents, a newsletter, medical update, and other information.
New Approaches to Neuroblastoma Therapy (NANT) (USA) This is a consortium of Universities and Childrens Hospitals funded by the National Cancer Institute to test new therapies for neuroblastoma, in phase I trials. The Web site includes details of research, member institutions, news etc.
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Parent's information for Neuroblastoma (CancerNet) Information about the disease, staging, and treatment overviews. It is reviewed each month by a panel of medical experts.
 Associazione Italiana per la Lotta al Neuroblastoma (The Italian Neuroblastoma Association)
Catie Hoch Foundation, The The Foundation was set up in memory of Sloan-Kettering
Friends For Steven A non-profit organization based in Buffalo Grove, IL, founded in 1997 to raise awareness and funds for research into treatments for neuroblastoma. The site has information about neuroblastoma, events, and donations.
General information for neuroblastoma (St Jude's Children's Research Hospital)
Informacion Sobre Neuroblastoma y Cancer Infantil A personal Web site about neuroblastoma and other childhood cancers. It includes information for parents and the public. The Web site is in Spanish and also has English and French language support.
N-BLASTOMA- The Neuroblastoma Online Support Group (ACOR) Email list, includes details of how to join etc.
Neuroblastoma (Health Canada) in the booklet "This Battle Which I Must Fight"
Neuroblastoma (UK) a factsheet produced by the United Kingdom Children's Cancer Study Group and CancerBacup linked to the UKCCSG booklet "A Parent's Guide to Children's Cancers".
Neuroblastoma (Royal Marsden Hospital, UK) An on-line booklet.
Neuroblastoma Hope Foundation (ACOR) Information about diagnosis, treatment, genetics, survivorship and a broad range of issues, FAQ, bibliography, glossary etc. The site is by Honna Janes-Hodder who is an active patient advocate having lost her son to neuroblastoma.
Pediatric Oncology Resource Center: Neuroblastoma (USA) This page contains information and links on various aspects of neuroblastoma. It is part of the Pediatric Oncology Resource Center, a site produced by parents of children with cancer, hosted by Association of Cancer Online Resources.
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See also Neuroblastoma Organisations
See also Home Pages of Children and Families (Neuroblastoma)
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Bailey Hope Kelly's Home Page Bailey was diagnosed with neuroblastoma March, 2001. This Web site includes pictures of Bailey and her family, updates, details of treatments including high dose chemotherapy and a stem cell transplant.
Brandon' Page This is a memorial to Brandon who was lost to neuroblastoma in 1999. Brandon who was diagnosed with neuroblastoma at the age of 3 in 1997. The site includes information about Brandon's treatment, pictures and poems.
Breanna's Page (USA) Brenna was diagnosed with neuroblastoma at 7 years old.This site has been set up by a close friend of her family and includes progress reports about Brenna's treatment, links, her awards and guestbook.
Daniel Woods Memorial Fund (County Tyrone, Northern Ireland) The web site helps raise funds for the Neuroblastoma Society. It is a memorial to Danniel who was lost to neuroblastoma in 1999 and includes a photo album, guest book and information about money raised.
Darian's Page (USA) Darian was a 2 yr old girl from Indiana who was diagnosed with neuroblastoma in January 1999. The pages include pictures and a detailed diary of Darian's treatment. She sadly lost her battle with the disease.
Dominique's Web Site This is the memorial Web site of Dominique, from Anchorage, who was diagnosed with neuroblastoma just before her 2nd birthday in April 2001. The site includes a journal, links to medical information, a guest book and other information.
Emily Rose Kirk's Home Page Emily was diagnosed with neuroblastoma at age 6 months, this page is by her mother. an inspiring patient story.
Emma' Home Page Emma, age 2, was diagnosed with stage 3 neuroblastoma in 1997. This site has been set up by her parents and includes an overview of neuroblastoma, Emma's treatment updates, photogallery and friends.
Jacob's Page (USA) "Jacob, a active toddler, has been receiving treatment for neuroblastoma..." This page includes pictures of Jacob, treatment updates, and links to related sites.
James Birrell's Web site / James Birrell Fund for Neuroblastoma James has been battling with neuroblastoma since he was 3. His adventurous Web site includes updates, pictures, information about neuroblastoma, a guestbook, and fundraising linked with the Sick Kids Hospital of Ontario.
Jonathan's Home Page Jonathan was diagnosed with neuroblastoma at 22 months old. The pages include pictures and a detailed journal of Jonathan's treatment of chemotherapy following by monoclonal antibodies starting in July 1999.
Joshua's Home Page (USA) Josh was diagnosed with stage 4 neuroblastoma just before his 3rd birthday in July 1999. These pages include Joshua's story, summary and neuroblastoma links.
Joshua's Tumour Site (UK) Joshua was diagnosed with stage 3 MYCN amplified neuroblastoma in May 2000. The Web site, by his parents, includes pictures and a detailed treatment plan and news updates.
Kaitlyn's Page Kaitlyn was diagnosed with stage 4 neuroblastoma at age 4. Her page includes a picture, guestbook, details of family and friends etc.
Kirsten's Journey (USA) this page is about Kirsten who was diagnosed with neuroblastoma at age 6 months and treated at the Children's Hospital of Philadelphia. The site includes a journal of Kirsten's treatment, timeline, and links.
Kurtis Edward Seaman Kurtis was diagnosed with Neuroblastoma in August 1998. He fought long and hard but lost his battle just before his 5th birthday. The Web site includes a journal, photographs and guestbook.
Neuroblastoma Children's Cancer Society - Wall of Fame pictures and stories of children with neuroblastoma
Reyanna's Page (UK) Home page of Reyanna, who was diagnosed with stage 4 neuroblastoma, at age 5 in 1999. The pages include her story, pictures etc.
Sarah's Home Page (USA) Sarah was 2 months old when she was diagnosed with stage 2A neuroblastoma in August 1998. The pages include a journal of Sarah's treatment, and pictures of Sarah and her family who live in Oklahoma City.
Sebastian's Story A memorial to Sebastian who was diagnosed with neuroblastoma at age 17months. The site includes 11 months of family newsletters with details of their experience with pictures. "He only needed a little time to make an impact on this world"
Sergi´s Neuroblastoma Page (Spain) Sergi was diagnosed with stage 3 neuroblastoma at age 4. English and Spanish language.
Stories and Faces: Neuroblastoma (Pediatric Oncology Resource Center) List of home pages of children affected by neuroblastoma
Tiara's Story (USA) These pages are by a close friend of Tiara a 6 year old girl from Orogon who has advanced neuroblastoma.
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See also Home Pages of Children and Families (all childhood cancers)
Physician's PDQ statement for Neuroblastoma (CancerNet) A referenced overview of the disease, cellular classification, staging, and current treatment overviews. It is reviewed each month by experts at the NCI.
Screening for Neuroblastoma (CancerNet) PDQ statement for physicians providing a summary of eviodence, significamce, and evidence of a screening effect.
Advances in Neuroblastoma Research This is an international meeting held every 2 years for researchers and clinicians with an interest in neuroblastoma. The Web site includes details of past and future research meetings, links etc.
Associazione Italiana per la Lotta al Neuroblastoma (The Italian Neuroblastoma Association)
Case study: stage III neuroblastoma (Division of Physiologic Imaging, University of Iowa) Radiological images - Orientation Slices
Medline search: "neuroblastoma" (National Library of Medicine, USA) Don't use this if you have local access to Medline !
Medline Search: 17q in Neuroblastoma (National Library of Medicine, USA)
MYCN Amplification in Neuroblastoma - Recent Publications (Neuroblastoma Online Researcher's Forum)
MYCN- myc myelocytomatosis viral related oncogene, neuroblastoma derived (Atlas of Genetics and Cytogenetics in Oncology and Haematology)
N-BLASTOMA- The Neuroblastoma Online Support Group (ACOR) Email list, includes details of how to join etc.
NBL-PROF - Neuroblastoma On-line Research Forum An international Email discussion list for those involved in treatment and research into neuroblastoma open to basic scientists, physicians, epidemiologists, clinical trialists, and others involved in neuroblastoma research.
Neuroblastoma - genetics OMIM database (On-line Medelian Inheritance In Man, National Centre for Biotechnology Information, USA) or see the UK Mirror (MRC)
Neuroblastoma - Radiological Images (Radiology Museum, Central Middlesex Hospital, UK) text and radiology images
Neuroblastoma Chromosome 17q Gain - Recent Publications (Neuroblastoma Online Researcher's Forum)
Neuroblastoma Home Page (Center for Medical Genetics, University of Gent) This site contains research information with a focus on the genetics of neuroblastoma; including details of protocols, techniques (FISH CGH etc), and research studies.
Neuroblastoma Laboratory - Philipps University - Marburg (Germany) The site includes information about neuroblastoma, details about the research unit, staff details, publications etc. English language.
Neuroblastoma Screening - Recent Publications (Neuroblastoma Online Researcher's Forum)
Neuroblastoma Teaching file: Metastatic Neuroblastoma images (by J Wallis,USA)
Recurrent Chromosome Abnormalities - Neuroblastoma (Cancer Genome Anatomy Project)
Sympathetic Nervous System Tumors (USA) Part of a SEER report on cancer incidence and survival among children and adolescents; 1975-1995. PDF format.
| Search for Related Abstracts for: "neuroblastoma"
These resources are intended for Health Professionals and Researchers
| | CancerLit: Neurologic Cancers (National Cancer Institute) On-line abstracts for health professionals. Sorted by month and year for Brain Tumors and Neuroblastoma.
| | Search CancerLit (University of Bonn)
| | Search Medline (National Library of Medicine, USA) for those without local access
| | Search OMIM (National Center for Biotechnology Information)
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See also General Childhood Cancer Resources for Physicians
See also Journals and Bulletins (in InterNet Resources for Cancer)
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Remember when using search tools on the Internet:
- Results may include links to information related to adult cancers; these are often quite different to childhood cancers even though they may have identical or similar names.
- Results may include information intended for different audiences; for example information for oncologists often assumes a great deal of prior knowledge and specialist education.
- The search term may include a word that is spelt differently in American and UK English (eg. Leukemia vs. Leukaemia, tumor vs. tumour). The pre-configured searches in this guide use American spellings as there are more North American based web
resources.
- The quality of information on the InterNet is variable - users should be aware of source reliability issues
- Parent's are strongly advised to discuss their information requirements with their doctor, who knows their child's specific details.
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