Home » Patient Organisation Activism Around the World

Patient Organisation Activism Around the World

International workshop

‘Patient Organisation Activism Around the World’

 18-19 May, 2015,  Brighton, UK

Organised by the Centre for Bionetworking

Sussex web report

 The full report



Achim Rosemann, Centre for Bionetworking
Adrian Ely, Centre for Bionetworking
Brian Carlin, Aspire UK
Carrie Heitmeyer, Centre for Bionetworking
Changqing Zhu, Muscular Dystrophy Association China
Choon Key Chekar, Centre for Bionetworking
Donna Sullivan, Unite to Fight Paralysis, USA
Eungho Ahn, Korea Spinal Cord Injury Association
Hayley MacGregor, Institute of Development Studies
Hung-Chieh Jessica Chang, Centre for Bionetworking
Jan Barfoot, University of Edinburgh
Komal Kamra, The Spinal Foundation, India
Linda Allan, Centre for Bionetworking
M Louis Stanislas, Muscular Dystrophy Foundation, India
Margaret Sleeboom-Faulkner, Centre for Bionetworking
Marina Marouda, Centre for Bionetworking
Masae Kato, Centre for Bionetworking
Masatoshi Ito, Japan Spinal Cord Foundation
Nicoletta Madia, United Parent Projects Muscular Dystrophy, Italy
Paul Lenihan, Action Duchenne, UK
Prasanna K Patra, Utkal University
Stuart Blume, University of Amsterdam
Suli Sui, Peking Union Medical College
Yan Guan, Halfway Home Beijing, China
Yeyang Su, Centre for Bionetworking
Yi-Chen (Tammy) Sun, Taiwan Muscular Dystrophy Association


Workshop Concept
Worldwide the number of patient organisations and support groups are growing rapidly, but there is a substantial difference regarding patient representation and activities in different countries. For as yet we only have only some impressions of the activities patient organisations in different countries engage in, especially in relation to conditions for which scientists are trying to find a cure. Patient group activities include assisting patients and their families, advocacy for their rights and interests, mediate between patients and companies, and actively engaging with science and industry with the aim of finding a cure. This workshop aims to both deepen our insight into these activities and to facilitate the exchange of ideas among patient organisations on a global level.

The workshop will discuss and exchange ideas about the work of patient organisations engaging in Muscular Dystrophy and Spinal Cord Injury in various countries.
Our aim is four-fold:
1. To examine the extent to which cross-fertilisation of ideas is possible and the activities of patient organisations are constrained by local conditions;
2. To understand the extent to which patient organisations prioritise improving the living conditions of patients and their families or the search for a cure;
3. To establish the pros and cons of working with industry and hospitals in terms of clinical trials and other forms of treatment and research.
4. To explore opportunities and challenges for international collaboration by patient groups in different countries and regions.
As we realise that in some countries, patient organisations are only gradually getting off the ground, we hope that the workshop can contribute to a fruitful exchange of perspectives. The same countries may have experience with the provision of innovative stem cell therapies. Distribution of knowledge on experience with these therapies could be beneficial to patients.

The desired outcomes of this workshop are:
– To stimulate reflection and the creation of good ideas through the exchange of different perspectives;
– To publish and disseminate a report based on the questions asked above;
– To write academic articles, and, if there is need and scope for it, put together a research proposal.
Centre for Bionetworking:
This workshop is organised by the Centre for Bionetworking, which is conducting research on patient needs and scientific networks in Asia and the UK. The invited delegates are leaders of support organisations and groups for Muscular Dystrophy and Spinal Cord Injury from Europe, the USA and Asia. The approximately 12 leaders from patient support groups, will have intimate knowledge of and experience with the activities of their organisation, and are open to initiatives and ideas to support patients. We have funding from the Economic and Social Research Council (ESRC, UK) and the European Research Council (ERC) to provide reimbursement for travel and accommodation for participants of the conference at the University of Sussex.

The first day will be dedicated to exchanging information, knowledge and experience and discussing patient group activities, including material and financial support, patient and carer needs, and issues of identity and community. The second day will focus on issues and challenges related to working with the science community, medical professionals and industry, the search for therapy (expectations, costs, results), and knowledge activism. We will also discuss mutual learning and opportunities for future collaboration.