The organisation was formed as an association of national dystonia patient groups in Spoleto, Italy, on 18 June, 1993. The name was European Dystonia Federation (EDF) and the office address was at The Dystonia Society, in London. In 2003, EDF was formally registered in Belgium as an Association International Sans But Lucratif (AISBL) a not-for-profit organisation – and the registered address (‘siege’) at an address in Brussels.
At the General Assembly in Barcelona on 23 October, 2011, the delegates accepted the Board’s proposals to modernise the organisation and to change the name to Dystonia Europe (DE). The focus of activities also changed, to allow DE to provide a more effective ‘platform’ for partnerships for dystonia with scientists, patient organisations and others. The legal process was completed in 2012, with our registered office remaining in Brussels.
The World of Patient Advocacy in 1993
Dystonia – unknown to many people
Many people reading this in 2018 might not understand that dystonia wasn’t well-known or well-understood twenty-five or thirty years ago. In the1980s and early 1990s, there were still very few specialists with knowledge of dystonia, and diagnosis and treatment were very hard to find in most countries across Europe. We needed to find ways to stimulate interest in dystonia among the younger clinicians and researchers.
Dystonia is a small-scale illness with relatively low numbers of patients – only one of a group of neurological movement disorders, a group which forms only a small section of all neurological illness. Neurology itself, although extremely important in terms of human brain function, forms only a small proportion of the total of all medical conditions – in numbers of patients.
Dystonia prevalence in the context of other illnesses
Many estimates of the total number of human illnesses suggest that there are around 30,000 and some of them have huge numbers of patients across the world. WHO (World Health Organisation) data tells us that there are more than 600 neurological illnesses affecting almost 1 billion people in the world.
Accurate estimates are difficult to calculate because of lack of data – even for the “big” illnesses. For epilepsy, the estimated number of patients is 50 million. For the dementias – 24 million. Parkinson’s disease is estimated to have perhaps 10 million patients. The world figure for dystonia, based on estimates in Europe, would be around 6 million. But there is not enough clear data available on which to base a reliable total number.
Dystonia patient groups in the early 1990s
“Patient advocacy” was just beginning in many areas of health. Very few national dystonia patient groups existed in Europe, and almost all of those were only a few years old. All of these groups started by focussing on the important basic functions of providing contact between patients, good information on the illness and how to find a diagnosis – “patient support”.
More advanced ‘advocacy’ was the next step. Representing the interests of patients by providing useful and credible information to healthcare providers and decision-makers on what support and treatment patients and their families really need.
The need for partnerships in dystonia
In 1993, it was clear that national dystonia patient organisations in Europe should come together in partnership to learn from one another. They also needed to promote the interests of their members with healthcare decision-makers at all levels, including the European Union.
Although, in the EU, healthcare is considered to be an issue for national governments, many decisions are made in Brussels which affect aspects of healthcare in all member states.
European Parliament – Brussels
The stimulus of some specialists in dystonia – Professors Fahn and Marsden
By the 1980s, the level of knowledge of dystonia was still low among the majority of the broad medical profession. But two specialists in particular began to bring colleagues and young neurologists into their sphere of interest – dystonia.
Stanley Fahn in New York and David Marsden in London had both developed clinical and research interests in dystonia and movement disorders generally. They became good friends and close scientific collaborators on dystonia and other topics. Prof Fahn remains a very senior world figure in movement disorders, and a strong supporter of patient advocacy. Sadly, Prof Marsden died suddenly at a relatively young age in 1998, but his reputation lives on as a pre-eminent scientist in his field. His crucial work in establishing dystonia as an organic illness is commemorated by the David Marsden Award. Created by Dystonia Europe in 2003, this Award is presented every two years for the best scientific paper on dystonia from a young scientist.