Resources

Disease-specific resources

  • The American Brain Tumor Association offers free services including publications about brain tumors and treatment information, care and support group lists, referral information, and up-to-date research information. For brain tumor information and support, call 1-800-866-2282.

  • The Childhood Leukemia Foundation provides free services to children battling cancer and their families. They work closely with social workers, care providers, families and loved ones to provide meaningful information. Their goal is to help children and families
    living with cancer by assisting them in managing their care and improving the quality of their lives during the day-to-day struggles brought on by cancer.

  • Children’s Brain Tumor Foundation, a nonprofit organization, was founded in 1988 by dedicated parents, physicians and friends. The organization’s mission is to improve the treatment, quality of life and long-term outlook for children with brain and spinal cord tumors through research, support, education and advocacy to families and survivors.

  • Ewing’s Sarcoma Support Group provides information regarding research, second opinions and more. There is also information for family life such as preparing the home and sibling care.

  • The Leukemia and Lymphoma Society offers family support programs and referrals to local resources for help, education, patient aid and research funding. The website provides free materials, a discussion board, disease information, information on assistance programs and provides access to their information resource center. To connect with an information specialist, call 1-800-955-4572.

  • The Memorial Sloan-Kettering Cancer Center provides cancer information, links to finding clinical trials, information on pediatric cancer care and links to finding the right support group for you. The website provides short descriptions of a variety of rare cancers with links to Memorial Sloan-Kettering Cancer Center physicians who treat a particular cancer.

  • The Pediatric Brain Tumor Foundation provides informational booklets and informed parent and survivor internet conferences on a wide variety of topics from growth and development to the return to school after treatment. The website provides information, resources and personal stories to help survivors and their families deal with the challenging journey.

  • The Childhood Brain Tumor Foundation was founded by families, friends and physicians of children with brain tumors. The foundation works to improve prognosis and quality of life with links to information on treatments, therapy, research, personal stories and support resources.

  • The mission of the Juvenile Myelomonocytic Leukemia (JMML) Foundation is to cure JMML and to improve the quality of life of JMML patients and families worldwide through support resources, research, education, advocacy and charity. Currently there are programs established to help provide financial support, discuss current and future research, provide comfort packages for children, and for information on lessons learned from parents of kids with JMML.

  • The Neuroblastoma Children’s Cancer Society advocates for children who suffer from neuroblastoma and is dedicated to serving as a support center for their families. The primary focus of the organization is to raise money to assist local research in neuroblastoma cancer and to raise national awareness to focus additional research and funding until a cure can be found.