Recommended Pediatric Cancer Websites for Patients & Families
Pediatric Cancer Links:
About Kids Health; Trusted answers from the Hospital for Sick Children - www.aboutkidshealth.ca/En/Pages/default.aspx
The Hospital for Sick Children has an extensive list of patient family resources about a wide array diseases and conditions including information about common cancers in pediatrics, bone marrow transplant, test and procedures. In addition, current and practical learning packages are freely available for general use; topics such as subcutaneous injections, CVL care, and chemotherapy at home.
BC Children’s Hospital - www.bcchildrens.ca/health-info
This is a hospital specific website, however provides information and website links pertaining to pediatric hematology/oncology that can be generally used by patients, families and health professionals.
Childhood Cancer – www.childhoodcancer.ca
Founded in 1987, Childhood Cancer Canada (CCC) is the country's leading Foundation dedicated entirely to the fight against childhood cancer. Their primary goal is to improve the lives of children and their families with cancer; they achieve this through developing support programs and investment in collaborative cancer research. Childhood cancer is unique. It is not just a smaller part of the adult world of cancer. The biology, treatment & effects of treatment are unique to children. Through its unique partnership with all of Canada's 17 childhood cancer hospitals and treatment centers, it strives to expose children with cancer to the best possible treatments that will not only have the goal of cure, but leave them with an improved quality of life into adulthood. This website is meant for patients and families and has 3 main components: Education, Community and Research. It provides links to Clinical trial information such as C17, Cure Search and NCI. It provides some baseline information about child cancer, treatment, as well community links including fund raising ideas and school support.
Cure Search – www.curesearch.org
CureSearch for Children's Cancer is a non-profit foundation that accelerates the cure for children's cancer by driving innovation, eliminating research barriers and solving the field's most challenging problems. This site is an excellent online resource, providing up-to-date information about the various types of children's cancer along with research trials; definitions and descriptions of tests, procedures and treatments; information to help families manage the emotional aspects of caring for a child with cancer; and how to get involved in fund raising endeavors.
Children’s Oncology Group (COG) - www.childrensoncologygroup.org
The Children’s Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. COG unites more than 8,000 experts in childhood cancer at more than 200 leading children’s hospitals, universities, and cancer centres across North America, Australia, New Zealand, and Europe in the fight against childhood cancer. Not only does this site serve as a communication tool for health professionals (password required) but it also has a component for patients and families that do not require a password to access. The Children’s Oncology Group provides important information for children and their families from the time of diagnosis, through treatment and following cure. They are the creators of The Children's Oncology Group Family Handbook 2nd Edition, providing families with reliable information about treatment, support, and follow-up care for children and young people with cancer.
This handbook is now available for E-Readers free of charge in English, Spanish, and French. Links to download the E-Book versions to iBooks, Kindle, and other E-Readers can be found on the COG Family Handbook webpage (https://childrensoncologygroup.org/index.php/cog-family-handbook).
IWK Health Centre for Women and Children - www.iwk.nshealth.ca
On this site you will find information regarding the IWK Health Center resources and services for Children, Adolescents and Woman in the Maritime Provinces. You can learn about how to get there, where to park, specific clinics, contact information, and much more.
Parents’ Guide to Cord Blood Foundation - http://parentsguidecordblood.org
This is an international foundation that provides information and direction about cord blood. Information on the site includes medical uses of cord blood, donating cord blood, finding a cord bank, shipping and handling, processing, storage, and consumer protection.
POGO – www.pogo.ca
Pediatric Oncology specialists in Ontario have collaborated closely, since 1983, to deliver the right care at the right time and in the right place for children with cancer and their families. This work has been carried out by Pediatric Oncology Group of Ontario (POGO). Through healthcare innovation, survivor care, financial assistance for families, population data, policy development, research, and education, POGO has created a highly integrated and seamless pediatric cancer system that supports children and families throughout the spectrum of illness, recovery and survivorship. Much of the information on this website is for children/adolescents and their families with Cancer however a significant component is directed towards health professionals.
R Mission 2 - www.re-mission2.org
Re-Mission 2 is a collection of online games created by HopeLab, that help young people with cancer fight their disease. Each game puts players inside the human body to defeat cancer, using weapons like chemotherapy, antibiotics and the body’s natural defenses. The games are designed to motivate players to stick to their treatments by boosting self-efficacy and positive emotions and by shifting attitudes about chemotherapy. Both scientific studies and qualitative user research conducted on the original Re-Mission informed the design of each Re-Mission 2 game. HopeLab also worked with young people with cancer at hospitals across the country to develop every aspect of Re-Mission 2.
Starlight Canada – www.starlightcanada.org
Starlight Children's Foundation Canada is a charitable organization dedicated to bringing laughter, joy and hope back into the lives of children with serious illnesses. For over 20 years, in-hospital entertainment therapy and out-of-hospital fun family adventure programs have brought smiles to children when they need it most. Currently Starlight has team members in British Columbia, Alberta, Quebec and Ontario. On the website there is an animated video series (developed in partnership with Leukemia/ Lymphoma Society - http://chemo.starlight.org) to help children and youth understand diagnosis, treatment and side effects, as well as work through the challenges of coping. As well there is an online social network for teens with Chronic and life threatening medical conditions, called Star-Bright World. Members are able to connect globally with others experiencing similar medical journeys.
Teens Living with Cancer – www.teenslivingwithcancer.org
The mission of Melissa’s Living Legacy: Teen Cancer Foundation is to provide resources that enhance the quality of life for teens living with cancer. Their vision is that all teens with cancer and their families will have the opportunity for life-affirming experiences throughout all stages of disease and treatment. This website has concrete information about cancer, treatment, procedures and side effects. It offers discussion between users of the site and also has created a link to a facebook page. It is written in language that is relevant and understandable by teens. The founder and director of the foundation is a mother of an adolescent with cancer and the content is reviewed by a group of medical advisors and board of directors to ensure content is accurate.
Understanding Childhood Cancer with Dr Geoff
This is a series of audio podcasts for patients and families who learn by listening, delivered on itunes about various child hood cancers.
Young Adult Cancer Canada - www.youngadultcancer.ca
Young Adult Cancer Canada (YACC) was established in 2000 (originally as RealTime Cancer) by Geoff Eaton after his first cancer challenge. Geoff’s vision focused on educating and supporting young adults. At the core of that vision was the belief that cancer–like all of life’s challenges–brings with it valuable lessons and experiences. Today, YACC is focused on the promotion and evolution of its five primary programs: the online community, Retreat Yourself, Retreat Yourself Adventure, Localife, and the annual Survivor Conference. YACC is currently based in St. John’s, NL, with an office team of 13 across the country.
Websites with some pediatric content:
BC Cancer Agency - www.bccancer.bc.ca
This website provides information about cancer for all ages but has an extensive list of pediatric resources and websites available for patients and families as well as health professionals.
Canadian Partnership Against Cancer - www.partnershipagainstcancer.ca
Cancerview.ca connects Canadians to online services, information and resources for cancer control. It is designed to benefit: People affected by cancer, including patients, survivors, friends, family and the public; People who treat or care for people affected by cancer; and People who work in cancer control or health-care organizations across Canada. This ever-evolving portal brings together resources from the many partner organizations across Canada and internationally working together in cancer prevention, screening, treatment, and supportive, palliative and end-of-life care.
Cancer Disease Specific Websites with some Pediatric content:
Brain Tumour Foundation of Canada - www.braintumour.ca
The Brain Tumour Foundation of Canada is comprised of adedicated team of volunteers, patients, survivors, family members, health care professionals and staff, determined to make the journey with a brain tumour one full of hope and support. Their vision is to find the cause of and a cure for brain tumours while improving the quality of life for those affected and their mission is to reach every person in Canada who is affected by a brain tumour through support, education, information and research. The Foundation raises funds to lead research into the cause of and cure for this devastating disease. We also provide vital programs for the brain tumour community, including Support Groups and Information Day Conferences, and resources like the Brain Tumour Handbooks and Information Sheets.
Kidney Cancer Canada - www.kidneycancercanada.org
Kidney Cancer Canada was founded by patients for patients and is the first and only Canadian charitable, patient-led, support and advocacy organization for kidney cancer. Through their mission, they are working to create a community of Canadians affected by kidney cancer and ensure that no one is alone on this journey. Their mission is to improve the lives of those affected by kidney cancer across Canada by: advocating for access to new treatments; promoting research; and providing support, information and education. There is a small component of pediatric specific content, describing Wilms Tumour.
Leukemia & Lymphoma Society of Canada - www.leukemia-lymphoma.org
The Leukemia & Lymphoma Society (LLS) is the world's largest voluntary (nonprofit) health organization dedicated to funding blood cancer research and providing education (for patients and families as well as for health professionals) and patient services. The mission of LLSC is to: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. They have disease specific information on childhood blood cancers as well as supportive resources to manage their cancer. Most of their resources are free and available in downloadable versions.
General Cancer Information Websites:
Canadian Cancer Society – www.cancer.ca
The Canadian Cancer Society website has information on specifics cancers; many are adult focused, however they do highlight Brain Tumours and Leukemia in Children. They are the sponsor of Camp Goodtime and provide information about locating a Camp Goodtime near you. As well they provide helpful information such as local accommodations for cancer patients across the country, or how to donate hair or obtain a wig.
Palliative Care Resources Websites:
Canadian Virtual Hospice – www.virtualhospice.ca
The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, health care providers, researchers and educators. In 2001, a group of palliative care leaders gathered to consider whether a web-based platform could address some of the gaps in palliative care in Canada. They recognized that Canadians need a reputable source for finding information and support, whenever they need it, wherever they live. There are both educational and supportive aspects for patients and families, as well as a specific page for health professionals promoting relevant learning opportunities and practice tools. This hospice service allows those without ready access to palliative care specialists, to ask questions to a clinical team specialized in palliative care.
Canadian Hospice Palliative Care Association - www.chpca.net
The CHPCA is the national voice for Hospice Palliative Care in Canada. Advancing and advocating for quality end-of-life/hospice palliative care in Canada, its work includes public policy, public education and awareness. Established in 1991, its volunteer Board of Directors is composed of hospice palliative care workers and volunteers from Canadian provinces and territories as well as members-at-large.