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Neuroblastoma
Neuroblastoma is a tumour, which arises either in the
sympathetic nervous system or closely associated adrenal glands and is usually, although
not always located in the abdomen. Because the symptoms of the disease tend to be varied
and vague, some 65% of neuroblastomas are not diagnosed until the disease is widespread.
Despite intensive courses of chemotherapy and often initial success in treating the
disease, it often relapses, making this one of the most lethal of all childhood cancers.
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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.
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.
Neuroblastoma
(Health Canada) in the booklet "This Battle Which I Must Fight"
Neuroblastoma
(American Cancer Society) an online booklet including details about diagnosis, staging,
treatment etc.
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
Screening
for Neuroblastoma in Infants in North America The Quebec Neuroblastoma Screening
Project began in 1989 to assess the clinical and biological aspects of screening infants
for the presence of neuroblastoma in North America. This page gives publications and
abstracts.
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.
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