Advocate Committee

Written By 3B Digital

Composition:

Chair: Leona Knox (UK), Leona@solvingkidscancer.org.uk
Vice-Chairs:Nicole Scobie (Switzerland) nicole@zoe4life.org, Nick Bird (UK) nick@solvingkidscancer.org.uk  

Members:

  • Lucy Jones (Australia)

  • Christina Vouli (Greece)

  • Spyros Moschovakos (Greece)

  • Alan Pearson (Ireland)

  • Einat Baralia (Israel)

  • Kasper van der Toorn (Netherlands)

  • Leontine Heisen (Netherlands)

  • Mesrina Karisik (Slovenia)

  • Donna Ludwinski (US)

Objectives

●        Help develop, shape, support, and deliver the new SIOPEN strategy.

●        Become integrated in SIOPEN, actively participate in key committees.

●        Help improve access to state-of-the-art therapies for children with neuroblastoma across SIOPEN.

●        Incorporate patients’ views in the design and conduct of SIOPEN trials and projects.

●        Create a network of neuroblastoma parent organisations across SIOPEN countries.

●        Better understand local/national issues and use this to help inform SIOPEN activities.

●        Work collaboratively and cooperatively with other groups to help support the work of SIOPEN.

Membership

●        The Advocate Committee shall consist of individuals representing patients and parents, survivors, and advocacy organisations directly involved in neuroblastoma research.

●        The Committee shall aim to have members across all SIOPEN countries. More than one member is encouraged per country, to have wider representation of views and to share the burden of participation.

●        Advocate Committee membership is not contingent upon SIOPEN membership, but this is encouraged to allow full participation in wider SIOPEN activities.

Responsibilities

●        Committee members are encouraged to attend regular meetings and actively participate in the work of the Committee, including discussion and decision-making.

●        Committee members are expected to engage in discussions and deliberations with mutual respect, particularly in instances where differing viewpoints arise, fostering an environment of mutual understanding, empathy, and cooperation.

●        Committee members are encouraged to actively engage in various SIOPEN committees, panels and working groups, provided that their availability and skillset aligns with the requirements of those groups.

●        Committee members shall maintain strict confidentiality regarding sensitive information discussed during meetings or obtained through their involvement with SIOPEN.

Meetings

●        The Advocate Committee shall convene regular meetings, at least quarterly, to discuss ongoing initiatives, address emerging issues, and plan future activities.

●        Additional meetings may be scheduled as needed.

●        Meetings will be conducted virtually, with one in-person meeting conducted during the AGM.

Reporting

●        The Advocate Committee shall provide a written report to the SIOPEN leadership annually, summarising activities, accomplishments, and recommendations for consideration.

●        Reports from the Advocate Committee may also be presented during SIOPEN designated meetings.

Interested in joining the Specialty committee?

Please first register to become a SIOPEN member and then contact the specialty committee chair and/or co-chair in order to join the committee.

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Biology Committee