Survivorship – Current Initiatives
Better Together is a multiple phase project designed to help childhood cancer survivors and their caregivers, as well as nonprofit organizations and medical professionals working with this community, find organizations that offer assistance to survivors and their caregivers. We have already created a spreadsheet of organizations that offer survivorship resources, programs, and services that address the various challenges of childhood cancer survivorship. Next, we are pursuing “Better Together: Survivorship Connection.” In this phase, we are proposing a personalized approach where stakeholders contact us with a specific request or need, and a “Connector” will personally contact them them with organizations to fulfill their specific requests and needs . Coordinated action and collaboration are key CAC2 principles that we want to harness with this project because we truly believe that we are “Better Together.”
The Survivorship Toolkit is an initiative designed to assist childhood cancer survivors, their caregivers, and families. It is also designed to help nonprofit organizations and medical professionals incorporate survivorship resources and information into their organizations or institutions. The purpose of the Survivorship Toolkit is to gather, cultivate, create, and provide comprehensive resources for various survivorship challenges and concerns that need to be further explored and expanded. There are organizations that address some of these challenges, and we will try to work with them and other professionals so that we do not recreate anything. However, there are a number of areas where resources are lacking, and our goal is to address these areas in meaningful ways to provide more support to survivors, their caregivers, and families.
The Hope Portal is a searchable database that allow childhood cancer families and health care professionals to search for childhood cancer support services and information in a faster, more personalized way with less effort. Users can search the Hope Portal by diagnosis, geographic location, or by type of assistance needed. The Survivorship Interest Group is diligently working on increasing the number of organizations that provide survivorship resources on the Hope Portal. Additionally, in the near future, the Hope Portal will feature a separate survivorship portion with different search categories that are unique to this population.
