In the context of the World Parkinson’s Day on 11 April, the European Parkinson’s Disease Association (EPDA) launched My PD Journey, a first of its kind initiative hosted by MEP Mairead McGuinness to shine a light on the challenges brought by the condition on both patients and their families.
Parkinson’s disease affects 1.2 million European citizens – making it the second most common degenerative disease after Alzheimer – and this figure is expected to double by 2020 as the European population keeps on ageing.
But the disease also brings consequences on the lives of close relatives and healthcare systems fail to address this issue. More importantly, many concerns were raised regarding the way the disease is currently being diagnosed and dealt with. Today one of the main issues to be addressed regarding Parkinson’s lies in the fact that too much time elapses between the suspicion of the disease and the actual diagnosis in particular because the general practitioners community often lacks knowledge regarding this condition. In consequence, treatments that could be effective if used at an earlier stage of the disease are often wasted. In addition, Parkinson’s affects each individual differently, thus requiring adapted care for each patient. Though efforts have been made in this respect in Europe, with personalised medicine placed at the core of the Horizon 2020 programme for example, important gaps exist form one country to another regarding access and quality of treatment. Bringing best practices for all EU citizens to get best care and early diagnosis has therefore become one of the main goals to achieve for EPDA, but also for the European Parliament, MEP McGuinness said.

In November 2015, a second edition of the event will be organised to present further results and analysis and to assess My PD journey progress. Until then, the initiative has provided EU and national policy recommendations to work on, for example so that projects ensuring continuous improvement of diagnosis and treatment keep on being funded by the EC, or for national governments to implement early interventions strategies and support for people with Parkinson’s.