Multiple sources of educational materials, information and resources are available online for patients and families. There are national organizations that are diagnosis specific, federal and state programs, organizations offering resources and support and national/local foundations, all of which may be accessed via the Internet. Many of these resources have specific eligibility criteria for use. Because of this, we recommend that you contact your medical team for guidance on obtaining medical information and contact a social worker on the team for help accessing information on resources, financial assistance and support information.There are many foundations and programs with websites. Examples of these are the following:
CureSearch represents the combined efforts of the Childrens Oncology Group (COG) and the National Childhood Cancer Foundation (NCCF), two organizations united by a common goal: finding a cure for childhood cancer. This site helps you find information related to specific cancer type, treatment stage and age group, as well as tips on navigating the healthcare system and how to get support.
The Cancer Survivors Project (www.cancersurvivorsproject.org)
The Cancer Survivors Project is an organized, international community of long-term cancer survivors and their friends working together to improve the lives of children and adults after cancer. This site provides information regarding physiological and psychosocial late effects of cancer treatment, preventive care protocols and appropriate healthcare.
2bMe is the online component of Look GoodFeel Better program for adolescents and young adults, which is a non-medical, public service by the Cosmetic, Toiletry and Fragrance Association (CTFA) and its partners to help teens aged 13-17 who have cancer deal with the possible appearance-related, social and nutritional side effects of treatment.
The National Childrens Cancer Society (www.nationalchildrenscancersociety.com)
The mission of The National Children's Cancer Society is to improve the quality of life for children with cancer by promoting children's health through financial and in-kind assistance, advocacy, support services and education. This site offers information and a support network for teens, adults, parents and children.
Childrens Brain Tumor Foundation (www.cbtf.org)
The Childrens Brain Tumor Foundations mission is to improve the treatment, quality of life and the long-term outlook for children with brain and spinal cord tumors through research, support, education and advocacy to families and survivors. This site provides an array of information and resources to assist you in accessing expert care to ensure quality of life for the child with a brain or spinal cord tumor.
Leukemia and Lymphoma Society of America (www.leukemia.org)
Offers family support group programs, referrals to local resources, education, patient aid and research funding. Focuses on leukemia, lymphomas, myeloma and Hodgkins disease. Offers limited financial assistance for drugs used in care, treatment, and/or control of disease and transportation to treatment centers.
Candlelighters Childhood Cancer Foundation (www.candlelighters.org)
National pediatric cancer foundation provides information, local support groups and specialized information to families and caregivers of children with cancer. This organization was formed by parents of young cancer patients. Helps families cope with the emotional stress of their experiences; provides information on camps for children with cancer; operates an ombudsman program to assist families and survivors with problems in education, employment, insurance, welfare or military enlistment.
BMT InFonet (www.bmtinfonet.org)
Since 1990, BMT InfoNet has provided quality information and emotional support to more than 100,000 transplant patients, survivors and their loved ones. This site is particularly helpful because it is a collaboration between BMT medical experts and transplant patients and their families. The information provided is both accurate and practical.