The research team at Solving Kids’ Cancer is responsible for developing the agenda for the annual Neuroblastoma Parent Education Conference, using their knowledge, insight and experience of the disease. The views and experiences of the patients and guardians attending each year are also taken into consideration through our feedback mechanism, all of which helps to shape and steer the conference programme year-on-year to help serve the needs of families wishing to learn more about the international neuroblastoma research landscape.
Our ‘Patients Included’ status demonstrates our commitment to ensuring this conference delivers some of the research and clinical information that is important to parents and guardians of children with neuroblastoma.
An accredited Patients Included conference must successfully meet five criteria. The criteria and how we meet each one are listed below:
- Patients or caregivers with experience relevant to the conference’s central theme actively participate in the design and planning of the event, including the selection of themes, topics and speakers.
The team responsible for designing the agenda of the Neuroblastoma Parent Education Conference all have personal experience of neuroblastoma and are active participants in the research landscape as research advocates. They select themes, topics and speakers based on some of the latest research to emerge, as well as interesting clinical perspectives.
The overall programme is designed around the interests and needs of families currently affected by neuroblastoma, and feedback from delegates is considered during the planning process each year.
- Patients or caregivers with experience of the issues addressed by the event participate in its delivery, and appear in its physical audience.
Each year the Neuroblastoma Parent Education Conference features at least one speaker with personal experience of this disease, and the technical delivery of the presentations is overseen by the research team, all of whom have personal experience of neuroblastoma.
The audience is mainly parents and guardians of children who are suffering from neuroblastoma, or who have been very sadly bereaved by this disease. Normally around 100 parents/guardians attend the conference sessions, with approximately 60 of their children being cared for and entertained by professional staff throughout the event.
- Travel and accommodation expenses for patients or carers participating in the advertised programme are paid in full, in advance. Scholarships are provided by the conference organisers to allow patients or carers affected by the relevant issues to attend as delegates.
The full costs of travel and accommodation for all speakers are covered by Solving Kids’ Cancer. Solving Kids’ Cancer also provides the conference weekend free to parents and guardians of children affected by neuroblastoma and offers travel grants (in line with our travel policy) to ensure that travel expenses do not prohibit attendance. More information on the travel policy is available from our Senior Family Support Coordinator: Vicky Inglis.
- The disability requirements of participants are accommodated. All applicable sessions, breakouts, ancillary meetings, and other programme elements are open to patient delegates.
The venue selected to host the Neuroblastoma Parent Education Conference is fully accessible and can accommodate disability requirements that are highlighted as part of the conference registration process for all delegates.
All relevant sessions, breakouts, social events and the exhibition area are open to parents and guardians of children affected by neuroblastoma.
- Access for virtual participants is facilitated with free streaming video provided online wherever possible.
Solving Kids’ Cancer facilitates access for virtual participants by recording videos and sharing through our networks and via social media channels following the event. It is not possible to stream the videos live online, as they sometimes include sensitive information.