Advocating for better and timelier diagnosis, treatment and care for people with Parkinson’s and their families is at the heart of the My PD Journey project.
At a time when the situation is worsening1, political awareness of Parkinson’s as a priority health challenge remains low.
This means that the policies and initiatives needed to effect change at a European and national level are not yet in place, or are being implemented too slowly.
What are we doing?
Since the launch of My PD Journey in 2014, the EPDA and national Parkinson’s coalitions have actively engaged with political leaders at all levels.
A policy agenda for Europe
In 2015, the My PD Journey coalition developed 14 European and national policy recommendations to facilitate improvements in the management of Parkinson’s and to achieve concrete outcomes for patients.
These relate to improved access to individualised treatment and care, appropriate referral to specialised healthcare professionals, training and education, funding for projects, data collection and information to patients – many challenges that also face people living with other neurodegenerative diseases.
These policy recommendations were presented at a landmark event in Brussels on 14 April 2015, hosted by Vice-President of the European Parliament Mairead McGuiness (Ireland) and attended by high-level European Commission officials, MEPs and Member State representatives.
The EPDA’s EU Political Manifesto will be launched this summer – stay tuned for more information.
Engagement with EU stakeholders
The My PD Journey coalition is in ongoing dialogue with the institutions of the European Union.
On 18 February 2016, My PD Journey hosted a high-level summit on Parkinson’s disease in Europe in the European parliament in Brussels.
The event featured the launch of the project’s second major achievement – a new composite scale – and a policy discussion with EU decision-makers and stakeholders on options to improve timely diagnosis, treatment and care. It was supported by the invaluable patronage of MEP Heinz Becker (Austria) and MEP Jutta Steinruck (Germany), and featured a presentation from the European Commission’s Directorate for Research and Innovation on options for EU funding and research.
Should you wish to learn about upcoming activities or get involved in Parkinson’s advocacy at an EU or national level, please email firstname.lastname@example.org.
- The latest research shows that patient numbers are set to double to 2.4 million in Europe by 2030