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)

  • Aurore Saint Olive (France)

  • Spyros Moschovakos (Greece)

  • Georgia Arfani (Greece)

  • Alan Pearson (Ireland)

  • Einat Baralia (Israel)

  • Kasper van der Toorn (Netherlands)

  • Leontine Heisen (Netherlands)

  • Mesrina Karisik (Slovenia)

  • Donna Ludwinski (US)

Objectives

For the next year

  • More inclusive participation, outreach to national deputies and charities regarding country representation.

  • Increase visibility of the work of SIOPEN to advocate committee members to help improve engagement, other Specialty Committee Chairs invited to join Advocate Committee meeting(s).

For the next 5 years

  • 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 align 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 or another major conference.

Key achievements

Strengthened committee structure and membership.

Increased representation: new parent members from France and Greece, Carla has joined in her capacity as SIOPEN Manager.

Worked with Carla on key projects, including the Parent and Patient Resources webpage.

Provided support for SIOPEN leadership regarding the parent perspective on access to DFMO across Europe.

Participated in the CNS working group and review of treatment guidelines.

Discussed long-term follow-up guidelines from the parent perspective, proactively working with LTFU-QOL committee and SIOPEN leadership on the path to a potential tech solution.

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