The SIOP PODC Patient, Family and Stakeholder Engagement Working Group’s focus until 2021 was on investigating and addressing matters of importance and concern to children with cancer and their family members in low- and middle-income countries (LMICs). This included such matters as the quality and availability of treatment and care, enhancing the parents and other family members’ participation in the treatment, including to what extent that are consulted and involved in the treatment of their own child/family member.

In 2021, we have pivoted to focus on childhood cancer survivorship, to parallel CCI’s main focus for the coming years. We have recruited 6 survivors to join our WG and expect to give voice to survivors from LMIC
– strengthen the support they receive from the healthcare communities in their regions
– work in partnership with them to advocate to reduce discrimination, stigma, marginalization
– improve post-treatment follow-up and integration in adult health care.

SIOP Global Health Network Parent, Family and Stakeholder Engagement Working Group (PFSE) is looking for additional members interested in issues of survivorship to join our effort.