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) http://ec.europa.eu/dgs/health_consumer/dyna/enews/enews.cfm?al_id=1490
Member of the Society for Neuro Oncology (SNO) http://www.soc-neuro-onc.org
Affiliated Health Professional Membership of the American Society of Clinical Oncology (ASCO) http://www.asco.org
Board membership of the British Neuro Oncology Society (BNOS) http://www.bnos.org.uk
Founding member of Rare Cancers Europe (RCE) http://www.rarecancerseurope.org
Founding member of Cancer52 http://www.cancer52.org.uk
Member of the European CanCer Organisation’s Patient Advisory Committee (ECCO PAC – Vice-Chair) http://www.ecco-org.eu/PatientsAdvocacy/Patient-advisory-committee
Former member of Rare Disease UK’s Working Group on Patient Care and Information http://www.raredisease.org.uk
Member of the European Society for Medical Oncology (ESMO) Cancer Patient Advocacy Group (PAWG) http://www.esmo.org
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) http://www.patientsacademy.eu/index.php/en/ and http://www.patientsacademy.eu/index.php/en/about-eupati/15-meet-our-advisors
Member of the European Federation of Neurological Associations (EFNA) http://www.efna.net
Consumer representative of the Cochrane Collaboration Neuro Oncology Group https://www.cochrane.org
Member of the Steering Group of the Neuro Oncology James Lind Alliance (JLA) Priority Setting Partnership (PSP) http://www.neuro-oncology.org.uk/index.php
Member of the EURORDIS (Rare Diseases Europe) Policy Action Group on Rare Cancers http://www.eurordis.org
Member of the European Cancer Patient Coalition (ECPC) http://www.ecpc.org
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.