In many parts of the developed world, people living with SCI have formed national self-advocacy organisations; in the developing world, however, such groups are less common. Where they do exist, the groups lack the resources to meet and exchange ideas and experience.

The numbers of people living with SCI in any one country are relatively low – which means that it is important to reach beyond local and national borders in order to achieve an optimal exchange of knowledge and experience.

In 2006 the European Spinal Cord Injury Federation (ESCIF) was founded. The federation was the first to formalise links between SCI consumers across national borders. The umbrella organisation now has member organisations in 28 European countries. ESCIF has worked to identify needs and to define the SCI agenda in Europe, and has worked with professional bodies and organisations to further its goal: to improve the quality of life of persons with SCI (www.ESCIF.org). ESCIF policy and the results of ESCIF projects have been presented at international meetings and have already been instrumental in promoting reform in the organisation of SCI treatment and rehabilitation in several European countries.

ESCIF 2011 Congress delegates, The Netherlands

At the 49th Annual Scientific Meeting in 2010 of the International Spinal Cord Society (ISCoS) – the worldwide organisation for SCI clinicians and researchers – ESCIF raised the question of a global consumer network before an audience of both SCI consumers and professionals. The reaction was resoundingly positive! ISCoS has already demonstrated its support by scheduling consumer-led sessions at all future annual meetings, starting in 2012.

In Asia, the ASCoN consumer network was established at the conference in New Delhi in 2010 with the goal of improving the levels of participation and quality of life of persons with spinal injury across Asia. The network is currently working on developing its structures, identifying future strategies and priorities. Also the network is currently striving to establish new consumer organisations in Asian countries, to bring together existing SCI consumer groups within Asian countries to form national organisations, and to expand the activities of existing national organisations. In June 2012 the consumer committe website (http://www.scs-isic.com/consumer_committee.html) of the Spinal Cord Society of India was launced.

ESCIF and the ASCoN SCI consumer network have been collaborating closely since 2010.