Resources for Families at The Center for Cancer and Blood Disorders
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:
The Family Health Library provides information in the broad areas of parenting, child development and also medical illnesses in children. The Library is located on the first floor of the hospital and is open to families of patients, as well as parents, educators, healthcare professionals and children. Books can be checked out by anyone, and can be returned through most public libraries in Colorado. The Family Health Library is also available online. This is a great place to do more in-depth research on cancer care, research and support groups.
CureSearch represents the combined efforts of the Children’s 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.
Through Children's Hospital Colorado's website, you can create your own webpage that will make it easy for you to update your family and friends on how your child is doing. Only those people whom you invite to your CarePage will be allowed to view the site – it’s secure and personal.
A CarePage is a Web page, where you can easily:
- Post news and updates about your child
- Exchange messages of support, without intrusion
- Post visiting hours and contact information
- Share photos with friends and family members
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 Good…Feel 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 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.
The Children’s Brain Tumor Foundation’s 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.
Offers family support group programs, referrals to local resources, education, patient aid and research funding. Focuses on leukemia, lymphomas, myeloma and Hodgkin’s disease. Offers limited financial assistance for drugs used in care, treatment, and/or control of disease and transportation to treatment centers.
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.
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.