Presentation from the parents

The parent group is open to any interested members, and currently comprises individuals across 3 EpSSG countries (Belgium, France,  and UK) and those with a mixture of paediatric sarcoma experiences and outcomes. We aim to use our collective voices to help shape future research across the EpSSG network in order to improve outcomes and treatment experiences for those diagnosed with paediatric sarcoma in the future.

Key responsibilities of the group are:

1 - To ensure that the patient/parent view is represented in the development and management of current and future paediatric sarcoma clinical trials and research. We do this by participating in EpSSG clinical trials or studies, such as FaR-RMS and MyKids, and research committees including early phase clinical trials. 

2 - To ensure that research outputs are disseminated in an accessible and understandable format to the parent/patient and public community. This involves creating plain-English summaries, diverse communication tools and identifying relevant platforms to disseminate research. Members are also involved in co-authoring articles. 

3 - To meaningfully participate in the Annual EpSSG Winter meeting to report on Parent, Patient involvement and engagement initiatives and share experiences from other roles individuals may hold in the paediatric cancer community.

4 - To provide access to a wide-range of parent/patient paediatric sarcoma communities via their charities and other platforms they may participate in.

5 - To constantly evolve and promote the role that advocacy can play within the EpSSG.