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Recent additions to this guide included: Event: Battersy Young Strings in Concert - 11th June 2000 (UK) a concert in tribute to of one of the orchestra members, Jamie Gregory, who sadly died from leukaemia last year. Raising money for the Leukaemia Research Fund ICCC - International Childhood Cancer Coalition (ACOR) Email list which aims to enable volunteers working on the creation of an international childhood cancer coalition to communicate with each other. United Kingdom Children's Cancer Study Group The UKCCSG is a national organisation treating children with cancer at 22 specialist centres throughout the UK. Activities include clinical trials, research and professional development. The web site includes a parents guide and newsletter. For Researchers: Molecular Biology of Rhabdomyosarcoma: overview, references, links to gene databases and abstracts National Children's Cancer Society (USA) a non-profit organization founded in 1987. The web site includes details of NCCS activities including providing families with financial and in-kind assistance, advocacy, support services, education, prevention, and international programs. Candlelighters Childhood Cancer Society: Cardinal Glennon Hospital Chapter (St. Louis, MO, USA) a not for profit parent's organisation associated with Cardinal Glennon Hematology-Oncology Clinic. The web page includes a Newsletter, details of activities, pictures etc. For Researchers: Molecular Biology of Neuroblastoma: overview, references, links to gene databases and abstracts Nordic Society of Pediatric Haematology and Oncology The site includes details of NSPHO, publications, links, details of meetings, a section for young doctors etc. Leukemia and Me - a poem by Joan Fleitas RN (in Band-aides and Blackboards) a story-rhyme for children divided into 3 parts describing blood cells, about the leukemia "bullies", treatment and other issues. A wonderful inspiring poem. Foundation for Children with Leukaemia (UK) a charity founded in 1988 which provides resources for leukaemia treatment and research in centres throughout the UK and funds the Paul O'Gorman Centres at GOS and Bristol. The web site includes details of the charity's work, events etc. 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. Cancer Incidence and Survival among Children and Adolescents (USA) a detailed report from the SEER Program, 1975-1995, including disease specific chapters in PDF format Jacob's Heart Children's Cancer Association (Capitola, USA) a non-profit organisation founded in 1998 to provide support for children with cancer and their families. The site includes details of the Association, services, contact information and links. King Faisal Specialist Hospital and Research Centre - Children's Cancer Centre (Saudi Arabia) a large 40 bed hospital near Riyadh treating children from throughout Saudia Arabia and the Middle East. Opened in March 1997 it is the only dedicated children's cancer centre in the Middle East. International seminar: Cancer in Children: Challenges and Controversies A British Council International Seminar, 30 January to 4 February 2000, London, UK. For paediatric oncologists and associated health professionals looking at controversial issues and reviewing new and future developments. start.at/childhoodcancer/ is a new "virtual address" for this site - save on the typing ! Camp Good Days and Special Times, Inc (USA) a non-profit organization which runs camps at Keuka Lake, Central NY for children and adults affected by cancer or HIV. Kid's camps include siblings and children who's parents have cancer. The site has details of programs, camp calendar etc. A Parent's Guide to Retinoblastoma A site by David H. Abramson, MD, and Christopher M. Frank (Ophthalmic Oncology Center, NY, USA) The guide includes several chapters covering various aspects including diagnosis, treatment and genetics. Kid's Camps This section of Children's Cancer Web has been expanded into a new page. It includes links to camp organisations that cater for children with cancer and their families. Hannah's Hugs (Illinois, USA) a program to help parents of children with brain tumors, including practical support for parents during hospital stays. The site includes information about the program, services, volunteers, donations and links. Emma's 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, photo-gallery and friends. The Valerie Fund / Valerie Children's Centers (New Jersy, USA) a non-profit organisation founded by parents in 1976. The Fund has raised over 8 million dollars to providing comprehensive health care for children with cancer and blood disorders by supporting a network of 5 hospitals in New Jersy. Foundation Maruzza Lefebvre D'Ovidio a Vatican foundation which provides care to terminally ill cancer patients. The Foundation is organising a children's cancer hospice in collaboration with Ospedale Bambino Gesu in Rome. Italian language. List of personal home pages of cancer kids. (ACOR Pediatric Oncology Resource Center) a list of links to the home pages of cancer kids and their families. The list is maintained by Patty, mother to James who has leukemia. It includes the kid's first names, age-group, and type of cancer. National Cancer Institute Research on Causes of Cancer in Children (CancerNet, USA) This factsheet gives an overview of NCI research findings and ongoing studies investigating the causes of childhood cancer. Intergroup Rhabdomyosarcoma Study Group (USA) The IRSG is funded by the National Cancer Institute and conducts research into rhabdomyosarcoma. The web site includes material for public and health professionals including details about the disease and information about clinical trials. Bone Cancer FAQ Answers to some of the frequently asked questions about bone cancer. It is produced by an international panel of bone cancer specialists. It includes Ewing's Sarcoma FAQ and Osteosarcoma FAQ. One Voice Across America - A Ride To Fight Childhood Cancer (USA) This site is by Bobby, a 19 year old survivor of childhood leukemia who is doing a 4,300 mile cross-country bike ride to raise money for childhood cancer. There are photographs, news articles, and details of how you can help. Childhood Tumours Registry of Valencia Province (Spain) The site includes detailed incidence and survival data for the period 1983-95 using the Birch/Marsden classification scheme. Includes tables and graphs- Spanish language. Dreamflight (UK) a registered charity founded in 1986 with the purpose of sending seriously ill children on their 'holiday of a lifetime'. Volunteers are involved in fund-raising and collect donated "Air Miles". Pediatric Cancer Foundation (New York, USA) a non-profit organisation founded by parents in 1970 to raise funds for research and provide support for children with cancer and their families. PCF has over 200 volunteer members. The web site includes details of events etc. The Retinoblastoma Society (UK) a national organisation providing support and information for people with retinoblastoma and their families. The Society has a network of Regional Co-ordinators and produces a newsletter for families affected by retinoblastoma North of England Children's Cancer Research (NECCR) (UK) The NECCR Fund was founded in 1979 by parents with the aim of promoting research into childhood cancer. The NECCR fund a large research team, most of the work is done in the North of England Children's Cancer Research Unit and associated laboratories at Newcastle University. Kid's Cancer Camps of Alberta (Canada) a non-profit organisation providing camping programs and other projects for children with a history of cancer and their siblings in Alberta. Programs are run in cooperation with the pediatric oncology centers of Calgary and Edmonton. Childhood Cancer for Belarus (University Children's Medical Center, Minsk, Belarus) The registry is supported by the non-profit Belarus-American Child Health Foundation. 70% of the radioactive fall out from the 1986 Chernobyl Power Plant explosion fell on Belarus. Tomorrows Children's Institute for Cancer and Blood Disorders (Hackensack University Medical Centre, New Jersey, USA) The Institute was established in 1987 and is the largest pediatric oncology program in NJ. The web site includes details about the Institute, medical and psychosocial programs, staff, etc. The Tomorrows Children's Fund is a non-profit parents group, support group and fundraising organization. Special Love / Camp Fantastic (Virginia, USA) Founded in1983 by parents whose daughter had leukemia to address the needs of children with cancer and their families. Programs include Camp Fantastic for chidren with cancer and activities for siblings, young adults with cancer..... Children's Cancer Research Fund (Minnesota, USA) The Fund was founded in 1979 and supports research into childhood cancer at the University of Minnesota Cancer Center. This site includes details of the Fund, news, research programs, events and other information. Outlook - Life Beyond Childhood Cancer (USA) This site by a survivor of childhood cancer and is supported by University of Wisconsin Children's Hospital. Outlook aims to empower survivors and includes information about health, insurance, emplyment and other issues +FAQ, links etc. Children's Hospital of Los Angeles (California, USA) CHLA was founded in 1901 and is a non-profit 330 bed hospital. The page about the Children's Center for Cancer and Blood Diseases includes details about the Center, programs, services, and staff. The Center also incororates the Childrens Hospital Los Angeles Tumor Registry which was established in 1968 and now has nearly 3,500 children registered. Dreamline Dreamline is a charity providing free airline travel for children coping with serious illness (particularly cancer and brain tumours). Donated frequent flyer awards mileage are used to provide vacations and emergency travel for kids and families who otherwise would not be able to afford travel. Paediatric Leukaemia (Singapore) A project by students from Crescent Girls' School in association with the National University Hospital to educate to public about Paediatric Leukaemia in Singapore. The site has several pages about various aspects of paediatric leukaemia. 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. Tomorrow Town - The Tomorrow Fund (USA) The Fund was founded in 1985 by people linked with children's cancer at the Rhode Island Hospital. The web site is a graphical virtual town, where you can visit the clinic, library, chapel, town-hall, post office, play ground, etc. Usry's home page - photographs and journal of Vutheary's experience with bone cancer (USA) Usry is an artist and has dedicated much of her web site to her friend Vutheary who is aged 18 and has bone cancer. Each page contains a photograph and text journaling aspects of Vutheary's treatment with chemotherapy. The Starbright Foundation a non-profit organisation that develops projects which aim to empower seriously ill children to combat the medical and emotional challenges they face. A collaboration of pediatric medicine, entertainment and technology producing videos, CD-ROMS etc. Robert and Karen's Home and Links Page (UK) these pages include information about Robert and Karen's son Matthew, who was diagnosed with Ewing's sarcoma in 1996.There are pictures of Matthew along with his poems, plus derails of treatments received and links to related sites. A Starting Point - to Connect with Resources Related to Pediatric Neuro-oncology (University of Miami Medical School, USA) This site provides links to resources about children's brain tumours listed by category (tumor types, treatments, organisations, listservers, research, etc), medical terms etc. The Anthony Nolan Bone Marrow Trust - new official site (UK) Founded in 1974, the Trust is a leading centre for research and also runs the UK register of potential donors. The web site includes details about the Trust, information about BMT, research, fund-raising, how to become a donor, etc. The Alliance of Genetic Support Groups (USA) A non-profit organisation founded in 1986;a national coalition of consumers, professionals and genetic support groups. The site includes details of AGSG, a Directory of Genetic Organisations, resources, on-line newsletter, publications etc. The Bone Marrow Foundation - Lifeline Online (USA) a national organisation involved in BMT issues; the web site includes details about the foundation, BMT information, support, current issues, personal profiles, fund raising events etc. The Neuroblastoma Society (UK) The Neuroblastoma Society is a charity offering parental support to families with children with neuroblastoma. The web site includes downloadable "booklet for parents", Newsletter, Medical Update, and other information. Home Care Guide: Caring for Young Persons with Cancer at Home (Pennsylvania State University Children's Hospital) This site provides a guide to developing and following home care plans for supporing a child with cancer at home. There are chapters on a wide range of topics including; infections, loss of appetite, constipation, skin problems, hair loss, promoting independence, helping brothers and sisters cope, and other aspects. The guide is part of the hospital's Pediatric Oncology Web Resources. Fundacion Natali Dafme Flexer - de ayuda a ninos con cancer (Argentina) Spanish language - a non profit organisation "of aid to children with cancer" working to improve the quality of life of children with cancer. Children's Cancer Research Fund / NY Medical College Children's Cancer Service (New York Medical College, and affiliated hospitals, USA) The Children's Cancer Service was established in the early 1980's treating children in the Hudson Valley area. The CCRF was founded in 1993, the site has information about CCRF, newsletter, etc Pediatric Oncology Resource Center (USA) This site hosted by the Association of Cancer Online Resources, it has been produced by a group of parents of children with cancer. The site includes sections on specific diseases, treatments and procedures, family help, inspirations etc. The group also run a number of online support groups. The Kimo Bear Project Inc. The Kimo Bear Project Inc., is a not for profit organization based out of San Francisco, California, benefiting Cancer stricken children. Bears are donated to children with cancer in California and elsewhere in North America. Teddy Bears for Cancer Kids (Taybear Company, Vista CA, USA) this is the site of Taylor a remarkable 7 year old girl who makes and sells hair clips, all the profits go to buy Teddy Bears as presents for kids with cancer. Widen the Web (USA) a site by a group of families who have had kids with cancer. Includes Kid's pages, Parent's pages, Snap Shots, Links etc. Hosted by The Health Communications Research Laboratory, University of North Carolina. This Battle Which I Must Fight - Cancer in Canada's Children and Teenagers (Health Canada) English and French language. An on-line booklet with illustrations. Includes information about childhood cancer, causes, treatment, feelings, and support. There is information on specific cancers. PED-ONC Email List - The Pediatric Cancers Electronic Support Group (ACOR) an unmoderated discussion list for patients, family, friends, researchers, and physicians to discuss clinical and non-clinical issues relating to childhood cancer. This page includes details about how to subscribe. PED-ONC@MEDINFO.ORG Tillison Pediatric Brain Tumor Page (Tillison Research Center, Indiana, USA) A page for caregivers with links to information and support groups for childhood brain tumors. Childhood Leukemia Center (Patient Centered Guides .Com) Includes material from "Childhood Leukemia: A Guide for Families, Friends, and Caregivers" by Nancy Keene. Childhood leukemia FAQ. Book ordering information. Emotional Aspects of Childhood Leukemia - Online Booklet (Leukemia Society of America) A 34 page handbook for parents, dealing with topics such as the emotional demands after diagnosis, schooling, brothers and sisters, and dealing with serious illness. Material for Children New in this guide: this section lists cancer related material produced for children (about childhood cancer, cancer in general, and health promotion) . Parents / carers /teachers should first view the material to check its suitability for their child. Intramedullary Ependymoma - Spinal Chord Tumours Page (UK) This site has been set by two patients with the aim of providing comfort, support, and information to others with this rare tumour. The site includes details of Martin and Anoushka's (age 14 at diagnosis) experiences, and a list of professional contacts. Making Cancer Less Painful - A Handbook for Parents. (Killam Children's Hospital / Dalhousie University, Halifax, Nova Scotia, Canada) a booklet by PJ. McGrath PhD, G.A Finley MD FRCPC, CJ. Turner RN MN, 1992. October / November 1997 James vs. Leukemia James was diagnosed with Leukemia, age 17 in April 1997. These pages are his mother's personal account of how leukemia has affected their lives. The site includes a log of James' treatment, summary of leukemia, "feeding the chemo kids" and other info. James' mother is a chemist and provides information about anti-cancer drugs. Kim's Cancer Links This site, by Kim whose has lost two family members to leukemia, contains links to leukemia and BMT sites. The aim of the site is to persuade more people to register as blood and bone marrow donors. Criteria for Assessing the Quality of Health Information on the Internet (International collaboration) A new working draft White Paper Sargent Cancer Care for Children (UK) a national charity, formed in 1968, that funds a skilled network of Sargent Social Workers in all major UK cancer centres, offering high quality counselling, financial help and practical care to children and their families. Chicago Community Cord Blood Bank (USA) The CCCBB is dedicated to facilitating bone marrow transplants for children with a variety of genetic and malignant diseases.The site includes information for potential donors, and health professionals, and details of this non-profit service. CCCBB is part of the Chicago Children's Hospital - Section of Pediatric Hematology/Oncology Study Finds Magnetic Fields Do Not Raise Children's Leukemia Risk (USA) News: A study by researchers from the National Cancer Institute (NCI) and the Children's Cancer Group (CCG) found no evidence that magnetic fields (EMFs) in the home increase the risk for childhood leukemia August / September 1997 This guide now contains an alphabetical listing of web sites for childhood cancer. Baby Rachel - An Urgent Plea to Hispanics to Become Bone Marrow Donors This is the page of a baby girl diagnosed with Acute Lymphoblastic Leukemia. She requires a bone marrow transplant - unfortunately, there are very few Hispanics (whose marrow has the best chance of a match) on the National Bone Marrow Registry. The Childhood Leukaemia Page new in this guide The Ewing's Sarcoma Page new in this guide The Neuroblastoma Page new in this guide The Osteosarcoma Page new in this guide The Retinoblastoma Page new in this guide The Wilms' Tumour Page new in this guide Neuroblastoma HomePage (for Health Professionals) (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. National Retinoblastoma Research and Support Foundation (USA) A support group established by parents and friends of children treated at Bascom Palmer Eye Institute. The NRRSF aims to establish a national network to provide support to parents with children affected by retinoblastoma. FAQ About Cancer Centers for Children and Adolescents CancerNet) Questions and answers about centers treating childhood cancer . June / July 1997 Blood and Bone Marrow Transplants is a new page in the companion site: Guide to InterNet Resources for Cancer. This page provides links to general cancer sites Remember: the treatment for childhood cancers may differ from those for adults. Quality of Medical Information on the InterNet is a new page in the companion site: Guide to InterNet Resources for Cancer Jeffrey's Folks Cancer Link (Canada) Jeffrey's Folks is a support group for families touched by childhood cancer. The site includes a quarterly newsletter which is part-funded by the Canadian Cancer Society. Icelandic Childhood Cancer Parent Organisation (ICCPO, Iceland) a national non-profit self-help group primarily composed of families of childhood cancer. The site is in the Icelandic, and includes some English language support. The site includes contact information and lists the objectives of the organisation: , providing welfare, support, information and advocacy for families of childhood cancer etc. Tampa Children's Hospital - Children's Cancer Center (Florida, USA) The Children's Cancer Center is a not-for-profit organisation providing emotional, financial and educational support for children with cancer and blood disorders. Markus' home page (Switzerland) Marcus was diagnosed with Ewing's sarcoma in 1995 - now a student at Zurich. This page contains his story, and links to Ewing's and other cancer resources. Orange County Foundation for Oncology Children and Families (OCF-OCF) (California, USA) An all-volunteer organisation formed in 1992 serving pediatric cancer patients and their families in Orange County. This web site gives details of the events the OCF-OCF support, in particular their summer camp for cancer kids. Parents of Children with Cancer a page for parents to share experiences by Teri and Tom whose 22 month old son was diagnosed with Acute Lymphoblastic Leukemia. Squirrel Tales: Practical Tips and Encouraging Ideas for Parents of Children with Cancer (USA) By Colleen O'Brien whose daughter was diagnosed with leukemia when she was 2 years old. This site includes encouraging stories and practicle tips (eg understanding health professionals, caring at home, etc), glossary, newsletter, and links. What's New ? Return to the Main Menu