We are involved in a wide range of advocacy activities from raising public awareness of the challenges of brain tumours to advocating for equal access to promising new therapies to encouraging the establishment of brain tumour patient and carer support groups in countries where they don’t yet exist.

To this end, we sit on a range of advisory boards, committees and initiatives focused on improving outcomes for brain tumour patients and helping to deliver improved care, support and information.

These activities include:

Member (alternate) of the European Commission Expert Group on Cancer Control, representing EURORDIS (Rare Diseases Europe)

Member of the Society for Neuro Oncology (SNO)

Affiliated Health Professional Membership of the American Society of Clinical Oncology (ASCO)

Board membership of the British Neuro Oncology Society (BNOS)

Founding member of Rare Cancers Europe (RCE)

Founding member of Cancer52

Member of the European Cancer Organisation’s Patient Advisory Committee (PAC – Vice-Chair)

Former member of Rare Disease UK’s Working Group on Patient Care and Information

Member of the European Society for Medical Oncology (ESMO) Cancer Patient Advocacy Group (PAWG)

Contributor to the World Federation of Neuro-Oncology Societies (WFNOS) magazine, soon to launch.

Member of the European Patients’ Academy on Therapeutic Innovation (EUPATI) Project Advisory Board (Vice Chair)  and

Member of the European Federation of Neurological Associations (EFNA) 

Consumer representative of the Cochrane Collaboration Neuro Oncology Group

Member of the Steering Group of the Neuro Oncology James Lind Alliance (JLA) Priority Setting Partnership (PSP)

Member of the EURORDIS (Rare Diseases Europe) Policy Action Group on Rare Cancers

­­Member of the European Cancer Patient Coalition (ECPC)

Advisory Board member for the EORTC’s SISAQOL (Setting International Standards of Analyses of Quality of Life) initiative for cancer clinical trials

Elected to the EURORDIS ePAG patient advisory group for the European Reference Network (ERN) on Rare Cancers (EURACAN)

Representatives of the IBTA are also frequent plenary and session presenters at major international neuro oncology and cancer conferences. We are also regular exhibitors at relevant congresses such as the American Society of Clinical Oncology (ASCO), Society for Neuro Oncology (SNO), European Association of NeuroOncology (EANO), British Neuro Oncology Society (BNOS), The European Cancer Congress (ECC), European Society for Medical Oncology (ESMO) congress, Asian Society of NeuroOncology (ASNO), brain tumour patient/carer conferences, etc.

For a full list of the conferences at which we have presented click here.

The IBTA has also published a wide range of articles. For a list, click here.