Tuesday 10 May 2005
An international advocacy organisation (IBTA) for the support of brain tumour patients and carers was formed during a major neuro-oncology conference held at Edinburgh (UK) last weekend.
A group of brain tumour patients, carers and health professionals who work in the area met during the joint conference of the World Federation of Neuro Oncology and the European Association for Neuro Oncology and established the International Brain Tumour Alliance (IBTA).
The advocacy meeting was attended by fifty people representing eleven countries from Europe, North America, Asia, the Middle East and Oceania.
The new group seeks to achieve a wider public understanding of the specific challenges faced by those living with a central nervous system tumour, their families and carers.
In the developed world more than 50,000 people annually are diagnosed with a malignant primary brain tumour.
Many of the tumours are known as glioblastoma multiforme (GBM) and have a particularly poor prognosis.
It is only in the last twelve months that a breakthrough treatment protocol involving concomitant radiation therapy and a chemotherapy drug called temozolomide has shown some promise of success in treating these tumours.
There are also many other people who suffer from so-called benign brain tumours and lower-grade tumours which can significantly affect their health.
The inaugural meeting appointed Mr Denis Strangman of Canberra, Australia, as its chair and Mrs Kathy Oliver of Surrey, UK, as its secretary. Mr Strangman is chair of Brain Tumour Australia and became involved as a patient advocate after the death of his wife Margaret from a malignant brain tumour in 2001.
Leaders and representatives from key brain tumour support, advocacy and information groups in the UK, US, Canada and Australia attended the meeting and support for the new patient and carer initiative has also come from brain tumour groups in Italy, France, Germany, India and Ireland.
The new group seeks to work with clinicians and others to assist people living with a brain tumour and their carers and families.
It is particularly keen to encourage the establishment of support groups in countries where they do not already exist and will approach industry and cancer agencies for assistance with this work.
In recent years similar international collaborative disease-specific groups have been established for breast, prostate, and lung cancers.
Contact: Denis Strangman 07871 450 678 (UK until 14 May), +61 2 6258 3912 (Australia after 16 May). e-mail: firstname.lastname@example.org