IBTA World Summit of Brain Tumour Patient Advocates


The Second World Summit of Brain Tumour Patient Advocates

Sitges, near Barcelona, Spain

25-27 October 2015

With more than 70 participants from 27 countries, the Second World Summit of Brain Tumour Patient Advocates took place from 25th to 27th October 2015 in Sitges, near Barcelona, Spain.

The conference was an unequivocal success and provided a unique opportunity for patient advocates to share information, exchange best practice and discuss and debate some of the pressing topics in the field of brain tumours today. Attendees renewed acquaintances from the First World Summit (in 2013) and forged friendships with newcomers who attended the Summit in Stiges for the first time.

In addition to patient advocates (some of whom were patients or caregivers/ former caregivers), the Summit participants included a number of medical and research professionals, and representatives of the pharmaceutical industry. The presence of a diverse group of stakeholders at the Summit ensured that there was an educational, collaborative and transparent focus on some of the biggest issues facing the international brain tumour community today.

To this end, the main topics discussed were:

  • The latest and most promising brain tumour therapies, encompassing neuro-oncological, surgical and supportive care approaches
  • Quality of life issues and measures and how they are perceived in various regions of the world
  • Brain tumour case studies in the context of country-specific settings (specifically Cameroon, France, Croatia, India and Turkey)
  • Healthcare systems and regional challenges, including access to therapies, support and information
  • The Brain Tumour Patients’ Charter of Rights
  • ‘Thinking outside of the box’ regarding research and development for brain tumour treatments
  • Paediatric brain tumours: sharing experiences from the United States, Japan, South Africa, Italy and Spain

The full Report of the Second World Summit of Brain Tumour Patient Advocates can be read online below, or by clicking here.


The First World Summit of Brain Tumour Patient Advocates

Lafayette, California, USA

18-20 November 2013

Nearly two years in the planning, the “First World Summit of Brain Tumour Patient Advocates” – organised by the International Brain Tumour Alliance (IBTA) – provided a unique opportunity to meet like-minded people from around the globe; exchange ideas on best practice, challenges and advocacy experiences; and build new relationships between organisations and individuals in the brain tumour advocacy arena.

The two-day Summit brought together for the first time ever, over 60 dedicated brain tumour patient advocates representing the main support, advocacy and information charities and not-for-profits from 20 countries around the globe.

The Summit was an idea conceived by the IBTA after witnessing how successful such a conference could be for other site-specific cancer advocates, such as those from the kidney cancer, chronic myeloid leukaemia and sarcoma communities.

Attendance at the Summit was by invitation and participants came from: Argentina, Australia, Belgium, Canada, Denmark, India, Ireland, Italy, Japan, Lithuania, Netherlands, New Zealand, Norway, Singapore, Spain, Sweden, Taiwan, United Kingdom, United States, and Zimbabwe.

Planning for the Summit involved raising sufficient funding so that financial assistance could be offered to brain tumour patient advocates to attend from the far corners of the world. A team of eleven IBTA advisors provided help, advice and support throughout the project, from its conception to its delivery.

 The main theme of the Summit was “collaboration and sharing”. The conference was professionally facilitated by a leading patient advocacy expert, Markus Wartenberg from Germany. The Summit was collegially designed so that nearly all of the participants either presented in a plenary session; spoke as part of a panel, ran a workshop or marketplace; acted as rapporteurs; or assisted in a practical way to ensure a smooth meeting.

The main finding from the meeting was that although our countries vary substantially in terms of wealth, regulatory and healthcare systems and levels of support offered to patients with brain tumours and their families, on the whole patient advocates at the Summit had more in common with each other’s challenges than they had differences.

To read the full Report of the First World Summit of Brain Tumour Patient Advocates, please click here.