PROJECTS

The ERN PaedCan is focusing on reducing inequalities in treatment of childhood cancer and focusing on improving follow-up care for survivors through fostering the further development of the Survivorship passport (SURPASS) tool.

CCI Europe is in the Steering Committee of the ERN PaedCan and strongly involved in all project activities. So far, CCI Europe developed a roadmap for parents? and survivors? groups within the network and a movie to raise awareness of late-effects.

As a public-private network, Harmony uses the benefits of big data to speed up the development of improved treatments for patients and more effective treatment strategies. CCI Europe is actively involved in representing patients? rights and voicing the interest of the patients across all activities of the network.

The Joint Action on Rare Cancers specifically focus on the implementation of the European Reference Networks in terms of research, innovation, education and state of the art information. CCI Europe is strongly involved in the development of Work Package (WP) 9 ? Childhood Cancer- together with SIOP Europe, who took the lead of this WP.

PanCareFollowUp (PCFU) aims to improve the quality of life for survivors of childhood cancer by bringing evidence-based, person-centred care to clinical practice in the real world. CCI Europe is responsible for knowledge sharing and dissemination within the PCFU. Furthermore, the survivors? group of CCI Europe is involved in all tasks and developments throughout the project lifetime.

EURORDIS is a non-profit alliance of 851 rare disease patient organisations from 70 countries to strengthen the patient voice and shaping research, policies and patient services of rare diseases. CCI Europe is collaborating with EURORDIS especially within the European Reference Networks (ERNs) and the Joint Action on Rare Cancers (JARC).

The European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment (ExPO-r-Net) set out the basis to build the European Reference Network in Paediatric Oncology. CCI Europe participated in this project as active partner to further develop the Survivorship Passport and to represent the interests of patients/parents and survivors.

The goal of PanCareLife was to improve the quality of life and opportunities for survivors of childhood cancer diagnosed before 25 years of age.

PanCareSurFup focused on the development of research studies for late effects and the establishment of follow-up guidelines as well as the dissemination of results.

CCI Europe was responsible for disseminating existing research and the developed guidelines among the European survivors? community.