RESOURCES
Here are some resources we have found helpful in navigating the pediatric cancer world. This is by no means an exhaustive list, as there is so much valuable information out there, but this can serve as a starting point. We also recommend utilizing your hospital/clinic’s social work services department.
CLINICALTRIALS.GOV
ClinicalTrials.gov is a resource provided by the U.S. National Library of Medicine, that provides patients, their family members, and the public with easy and free access to information on clinical studies for a wide range of diseases and conditions.
IMAGINARY FRIEND SOCIETY
Short films dedicated to educating children battling cancer in a not-so-scary way. They offer kid-friendly videos covering a wide range of cancer-related topics – everything from defining cancer itself to chemotherapy and MRIs.
RONALD MCDONALD HOUSE
Ronald McDonald House provides a place for families to call home so they can stay close by their hospitalized child at little to no cost.
CHRISTOPHER’S HAVEN
Christopher’s Haven is located in Boston, Massachusetts with a mission to operate a supportive community consisting of seven temporary apartments and a community recreation area for families of children being treated for cancer in nearby Boston hospitals.
ALSF CLINICAL TRIALS NAVIGATION
Alex’s Lemonade Stand Foundation will help to conduct relevant searches to provide a list of pediatric oncology clinical trial options within the US for families and their care team to consider.
CHILDREN’S CANCER INSTITUTE AT HACKENSACK / TACKLE KIDS CANCER
The Children’s Cancer Institute is a comprehensive program for children, adolescents and young adults (until age 22), that offers patients a multidisciplinary approach to treat all types of cancer and blood diseases. Located at Hackensack University Medical Center in Hackensack, New Jersey.
NATIONAL CANCER INSTITUTE
National Cancer Institute leads the nation’s research efforts to improve cancer prevention, detection, diagnosis, and survivorship. NCI manages a broad range of research, training, and information dissemination activities.
CHILDREN’S BRAIN TUMOR FOUNDATION
Their mission is to improve the treatment, quality of life and the long-term outlook for children and families affected by a brain or spinal cord tumor. Their site is a wealth of information for pediatric brain tumor families - research and trial info, insurance information, resource guides, support groups, etc.
PEDIATRIC BRAIN TUMOR ASSOCIATION
A leading nonprofit dedicated to the childhood brain tumor community. They serve the more than 28,000 U.S. children and teens battling brain tumors by investing in the most promising research and providing practical, informational and emotional support to families.
CERN FOUNDATION: EPENDYMOMA CANCER RESEARCH NETWORK
The CERN Foundation is a nonprofit organization dedicated to improving the lives of those affected with the rare brain cancer, ependymoma. Their site is a helpful resource for those recently diagnosed with ependymoma, offering clinical trial lists, support, treatment options and other info.
CHILDREN’S CANCER CAUSE
Children’s Cancer Cause is a national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families. They have a great advocacy resource center to help you learn why, who and how to contact your state and federal legislators.
Please note: All information presented here is for informational purposes only. It is not, and should not, be interpreted as medical advice for any individual.