Community Advisory Panel

The NF Community Advisory Panel (“the Panel”) is appointed by the Board of Directors (“the Board”) of the Children’s Tumour Foundation of Australia and operationally reports to the Support Services Team.

The role of the Panel is to:

• Ensure the diverse views of the broader NF community are heard and considered when decisions by the CTF team are being made
• Provide advice on the development and implementation of new and revised community information, programs and events
• Advocate for effective support services in line with the organisation's strategic goals, and
• Promote the work of the CTF across appropriate channels.

The composition of the Panel aims to reflect the diversity within the NF community around Australia, and all community members, their carers, and others in the family and community are invited to apply. 

The Panel will comprise up to 10 members at any one time. 

The Support Services Team has identified the need to incorporate the following areas of diversity in the Panel membership:

• Living in each state and territory.
• Individuals with NF1, NF2, and Schwannomatosis.
• Parents/carers and others involved in the lives of someone with NF1, NF2, and Schwannomatosis.
• Both males and females.
• A range of ages and life stages. 

Members of the Panel will collectively have a wide range of skills and experience and have:

• A strong commitment to improving the lives of people living with all forms of Neurofibromatosis, their families, and wider communities.
• Lived experience as a person diagnosed with a form of NF, a carer, or other family member.
• Willingness to participate thoughtfully and collaboratively as a member of the Panel.
• Potential to attend up to 5 online meetings of one-hour duration per year as determined necessary by the Support Services Team.
• Time to read materials prior to any scheduled meeting or within the requested review timeframe.

• Each member is appointed for an initial period of one year
• After one year the Support Services Team will recommend whether such a member should be offered an additional year of appointment.
• The Board will consider such recommendations and advice its decision 
• A leave of absence can be requested for consideration by the Support Services Team
• Members are required to respond to review requests within the timeframe set out in the request put to them (usually 4 weeks). Members who do not respond to two requests within the advised timeframe without notice will be removed from the Panel.

Meetings will be held quarterly, with ad hoc sessions arranged outside of these periods only if essential. 

Where a meeting is required, papers will be provided at least a week in advance of the meeting date. It is expected that Panel members have read all papers prior to the meeting.

A representative of the Panel may be requested to attend a Board meeting and update the Board on matters discussed by the Panel. 

The CTF recognises that asking community members to participate in this Panel requires ongoing support. The CTF commits to providing members with:

• A dedicated Support Services Team member to be a regular point of contact
• Training on the operation of the CTF and the role and responsibilities of the Panel, and
• Detailed guidance and support in responding to review requests.

Submissions for the 2024 NF Community Advisory Panel closed on November 5th. 

Once a year, we will invite the community by email and via our social media channels, to complete an expression of interest to join the Panel.