Parent and Family Resources

  • The Coalition Against Childhood Cancer (CAC2) is a collaborative network of individuals and organizations, including the Children's Cause, supporting and serving the childhood cancer community. CAC2, in collaboration with the Association of Pediatric Hematology and Oncology Nurses, the Association of Pediatric Oncology Social Workers, and KBI Biopharma, has launched the below tool -- Hope Portal, a comprehensive place to direct the families we encounter to find the help they need. 

 

Hospice Care and Bereavement Resources

  • Children's Hospice International: An organization that provides hospice education, training and technical assistance to families and health care providers who care for children with life-threatening conditions. Their Coordinated Care Program provides early and continual intervention and case management support for the whole family.
  • Compassionate Friends: Local self-help groups of bereaved parents and siblings offer mutual support, with more than 650 chapters across all 50 states. Groups are free and open to all.
  • Family 2 Family Network, Children's Brain Tumor Foundation: The F2F Network can provide newly-bereaved families with bereaved mentors to provide support and understanding.

 

Survivorship Resources

  • Children's Oncology Group's Long-Term Follow-up Guidelines: These guidelines provide recommendations for screening and management of late effects that my potentially arise as a result of having had cancer and/or its treatment. This resource was initially intended for medical professionals and contains medical and scientific terms that may not be familiar to laypersons. The COG strongly recommends discussing this information with your doctors.
  • Childhood Cancer Survivor Study (CCSS): Funded in part by the NCI, the CCSS was launched in 1994 to study the long-term effects of treatment on childhood cancer survivors. This long-term project follows two cohorts of adult survivors of pediatric cancer, along with many of their siblings: 14,000 survivors (+4,000 siblings) diagnosed between 1970-1986, and 10,000 survivors (+1,000 siblings) diagnosed between 1987-1999. Much of what we know about the long-term effects of childhood cancer treatment comes from CCSS research.
  • Ped-Onc Survivorship Clinics: An updated list of well-regarded survivorship clinics in Canada and the United States.

 

advocacy affiliations and resources

Children's Cause is proud to be a member of the following coalitions, each of which offers information and opportunities for community engagement:

  • Alliance for Childhood Cancer: The Alliance exists to provide a forum of national patient advocacy groups and medical and scientific organizations which meets regularly, shares ideas and concerns, and works collaboratively to advance research and policies to prevent cancer, and improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer.
  • Cancer Leadership Council: The CLC is made up of approximately 30 groups of cancer patient organizations, professional societies, and research organizations. While the CLC has grown in size and scope from its inception in 1993, its agenda remains patient-centered. The CLC is engaged in a wide range of issues, but they relate to a fundamental goal of ensuring cancer patients access to high quality care. 
  • Coalition Against Childhood Cancer: CAC2 effectively advances a variety of childhood cancer causes by unifying the childhood cancer community through broad-based coordinated action and collaboration that leverages the strengths and expertise of its individual members and minimizes duplication of effort.
  • One Voice Against Cancer: OVAC is a collaboration of national non-profit organizations representing millions of Americans, delivering a unified message to Congress and the White House on the need for increased cancer-related appropriations.

For more information about the government's role in fighting childhood cancer, visit our Advocate's Guide to Childhood Cancer & the Government.