Stuart Farrimond

The IBTA is pleased to announce the publication of a review  in the journal Neuro-Oncology Practice, the authors of which include IBTA co-chair Kathy Oliver and Senior Advisors Chris Tse, Christine Mungoshi and Anita Granero. A total of 29 leading patient advocates from across the globe co-authored the paper on the met and unmet needs of brain tumour patients in their areas of the world. In it they explain that their paper aims to lay “the groundwork for establishing an international baseline of patient advocacy activity and raising awareness of the vital requirement for more attention to the met and unmet needs of brain tumour patients and caregivers.” Across the globe, significant inequities in brain tumour treatment, care and support perpetuate. So the co-authors set their review within the framework of The Brain Tumour Patients’ Charter of Rights, the purpose of which is to achieve the best possible health and quality of life outcomes for adults and children living with this disease. A further aim of the Charter is to represent aspirational ideals against which quality standards, policies and practices are developed, monitored and delivered. The paper has been designated “Editor’s Choice” and is free access. Read more (full paper).

Leaders of the major brain tumour patient advocacy organisations from around the globe attended this two-and-a-half-day conference which included clinical lectures on the latest approaches for treating all different kinds of brain and central nervous system tumours; workshops; masterclasses; a panel discussion and an ask-the-expert session.  Leading clinicians in the field of neuro-oncology also attended the Summit as well as representatives of industry.

Participants at the World Summit in Vienna addressed the critical and unmet needs of brain tumour patients and their families. Brain tumours are a subset of rare cancers that face significant research and development challenges. World Summit participants aimed to seek solutions and foster advancements in the field.

The overarching message conveyed at the Summit was that each brain tumour diagnosis encompasses not only a medical battle but also a deeply personal narrative. Families and patients faced with a life-changing diagnosis and the realisation that there are not enough resources dedicated to brain tumours, are driven to become advocates for research, treatment, and support, despite the multifaceted impact of the disease on their lives. Read More