The experience of a child undergoing cancer treatment can be traumatic, distressing and isolating for parents and siblings as well as the patient. The impact on the whole family has been well understood by health professionals for many years, as has, the medical needs of the child, but also the necessity to provide services which look after the emotional and social needs of the family of the child.
Parent support groups have been formed over the past thirty years to provide information and practical, emotional and financial support for families to enable them to cope with the difficulties associated with lengthy treatment – often many miles from home.
Childhood Cancer International (CCI: formerly International Confederation of Childhood Cancer Parent Organizations) was founded in 1994, as an umbrella organization of childhood cancer grassroots and national parent organizations. Today, CCI is the largest patient support organization for childhood cancer. It is a global, parent-driven non-profit that represents 181 parent organizations, childhood cancer survivor associations, childhood cancer support groups, and cancer societies, in 90 countries, across 5 continents.
Recognized world-wide as the body representing children/adolescents with cancer, childhood cancer survivors and their families, CCI works in partnership with international development organizations, policy makers, civil society organizations, health, research and medical professionals .
It seeks to inform and catalyze synergistic, cross-sectoral collaboration towards a)reducing increasing deaths from childhood cancer, b) creating a supportive enabling environment for childhood cancer initiatives, c) advancing the cure for childhood cancer, d) improving equity in access to care and e)transforming the quality of care.
As the voice of the children/adolescents, the survivors and their families, who have endured the childhood cancer journey, CCI advocates for recognizing the rights of children/adolescents with cancer and prioritizing childhood cancer as an integral part of the local, national and global child health and development agenda. It draws attention to the fact that the cost of inaction is enormous while accelerated, concerted and integrated action will have societal impact and life changing gains for present and future generations.