The EPDA working with its partners at the European Parliament in March 2017.
What we want to achieve
Parkinson’s represents a serious challenge to the EU’s objective of achieving sustainable healthcare systems and promoting healthy social and economic development across the continent. Despite this, Parkinson’s disease could be better addressed at the European level and in many Member States.
The European Parkinson’s Disease Association (EPDA) believes that much more can be done to overcome key hurdles to effective diagnosis, treatment and care at the European level.
As such, one of the EPDA's strategic aims is to increase political awareness of Parkinson’s as a priority health challenge at the European and national levels, and build political support for concrete policy change. Read about our policy priorities in more detail in our Political Manifesto.
The EPDA has developed an advocacy toolkit for EPDA member organisations which offers a guide to national Parkinson’s organisations to help them develop, plan, prepare and initiate an advocacy campaign that will raise the profile of Parkinson’s in their respective countries. Download the toolkit in English and Spanish.
EPDA’s member organisations span Europe, each with their own specific challenges regarding the diagnosis and management of Parkinson’s.
We asked our members whether they think politicians are doing enough to help those with Parkinson’s and their families and what more they want to see achieved to provide diagnosis, treatment and care.
Watch our video from the EPDA’s annual members’ meeting in November 2017 in London to see what our members thought were the main challenges in their countries and what politicians can do.
Our key priorities for EU policy
The EPDA actively engages with European Union (EU) decision makers, partners and stakeholders to promote dialogue on policy gaps that negatively affect people with Parkinson’s and their families, and to collectively advocate for long-lasting change.
The EPDA strongly believes that the EU can make a real difference to the lives of people affected by Parkinson’s by:
- addressing the challenges related to access to medicines, health, and long-term and integrated care
- promoting research and innovation activities to provide the Parkinson’s community with new treatments and models for adequate care across Europe
- improving employment conditions, reducing stigma and ensuring accessibility to essential services for people with Parkinson’s and their carers
- improving systematic data collection by including up-to-date information on Parkinson’s in the ‘State of Health in Europe’ cycle
- considering developing a model for disease registries for Parkinson’s based on existing good practices at national and regional level
- exploring the possibility for the creation of European Reference Networks (ERNs), with specific regards to rare forms and advanced stages of Parkinson’s
- providing funding for projects that improve the lives of people with Parkinson's and their families
- raising awareness and proposing tangible solutions about the specific issues and challenges facing people with young-onset Parkinson’s throughout Europe, especially in relation to working life and family
- raising awareness and proposing tangible solutions about the challenges facing carers of people with Parkinson’s in Europe.
Our core activities
Educating the EU community and raising political awareness
The EPDA undertakes a wide range of advocacy activities to raise disease awareness and educate politicians and policymakers at EU level on the challenges facing people with Parkinson’s and their carers.
- we raise political awareness by organising a number of events in partnership with the EU institutions in Brussels (see below).
- we meet regularly with EU decision makers to discuss concrete actions that could drive progress in the diagnosis of the disease and also the delivery of treatment and care.
Watch some of our EU political advocates talk about Parkinson’s via the EPDA’s YouTube channel – including EU Health Commissioner Andriukaitis.
Building a European Parkinson’s community to advance policy change
At the European level, the EPDA works closely with a number of other patient organisations to advocate for a more robust policy response to Parkinson’s. Our partners include the European Patients Forum (EPF), the European Federation of Neurological Associations (EFNA), the European Brain Council (EBC), and Eurocarers. Our collaboration efforts focus on collectively strengthening and raising the patient voice within EU policymaking. We co-produce position papers on important issues, participate in projects that explore individual challenges that affect people with Parkinson’s and their carers, and put forward solutions to EU decision makers.
- listen to the ONE Neurology Podcast Episode 3: Living with a neurological disorder, featuring the EPDA Director General Russell Patten – exploring the challenges and opportunities for patient groups working in the neurological field
- read about Time matters: a call to prioritize brain health, an evidence-based report published by the Oxford Health Policy Forum in October 2019 – developed with the contribution and endorsement of the EPDA together with Alzheimer's Research UK, European Brain Council, Parkinson's UK and Jung & Parkinson.
- read about the EBC’s Value of Treatment for Brain Disorders research project, which the EPDA has contributed to.
- read about EFNA and Pain Alliance Europe’s European Parliament interest group Brain, Mind and Pain, as they ask ‘how can the EU #makeworkwork for young people affected by brain, mind and pain conditions?’
Contributing to EU policy
The EPDA continues to advocate for Parkinson’s at the highest political levels, and works together with EU decision-makers to advance policy action in the areas of public health, employment and social affairs, and research and innovation. We also work together with our partners (see above) to ensure that Parkinson’s is highlighted as an advocacy case study in order to help target broader issues.
- the EPDA is engaging with the European Commission, the European Parliament and the European Council on advocacy activities around access to treatments and integrated healthcare services, improved working conditions for people still in full-time employment, and awareness-raising and stigma reduction.
- we are involved in a number of Parkinson’s-related EU-funded projects that are focused on technology-enabled diagnosis and disease progression, including iPrognosis and TreatER.
Engaging EU policymakers in projects that make a difference
The EPDA frequently engages with EU policymakers to build political support for the projects it leads and participates in.
My PD Journey is a multi-stakeholder European coalition – led by the EPDA – which works towards improving the lives of people living with Parkinson’s. Since 2014, the EPDA has actively engaged with political leaders to promote the value of multi-stakeholder projects such as this and build political backing for the coalition’s activities, including the new Parkinson’s Disease Composite Scale (PDCS). This simple new rating scale, to be used primarily by neurologists and other healthcare professionals familiar with Parkinson’s, measures the severity of symptoms experienced by people with Parkinson’s in a timely way.
My PD Journey is currently working with neurological and clinical bodies, policymakers, and patient organisations to roll out this new tool across Europe, and beyond.
Below are some of the most recent major events we have organised in Brussels:
A landmark event, hosted by Vice-President of the European Parliament Mairead McGuiness, where the My PD Journey coalition presented policy recommendations to address unmet needs in European healthcare systems.
A high-level summit on Parkinson’s in Europe in the European Parliament, where My PD Journey showcased its new Parkinson’s Disease Composite Scale to more than 60 political and medical stakeholders.
A workshop in the European Parliament that engaged EU lawmakers on how they can support the rollout of the Composite Scale in clinical settings across Europe.
The PDCS was officially rolled out across Europe in May 2019. Should you wish to learn about My PD Journey’s upcoming activities or get involved, please email firstname.lastname@example.org.
'This is Parkinsons: a focus on young onset'
One of the EPDA’s priorities is to encourage EU decision makers to listen and act on our recommendations for meaningful policy change for all people living with Parkinson’s. A key part of this is to challenge and correct current misconceptions that Parkinson’s is a condition that only affects older people.
As a result, the EPDA held a series of events in Brussels in October 2018 with the aim of advocating at EU level for greater recognition of young onset people with Parkinson’s.
MEP Rory Palmer hosted an exhibition in the European Parliament – displaying the photography of Anders M. Leines – which presented a powerful portrayal of what it means to live with Parkinson’s as a younger person. The exhibition, This is Parkinsons, was on display from Monday 8 October until Friday 12 October and attracted many visitors.
We also held a policy roundtable in the European Parliament where we heard from MEP Marian Harkin on the work being done at EU level to help those with neurological diseases find quality and paid work.
YOPD focus group
Following these very successful Brussels-based events, the EPDA has since been acting as a facilitator for a series of periodic calls and meetings among a group of European people with young-onset Parkinson’s (YOPD) who attended the events. These meetings resulted into:
- The development of the #UNITED for Parkinson’s awareness campaign, which culminated with the Parkinson’s Eve conference organised in Leicester, UK, for World Parkinson’s Day 2019
- Supporting the survey on Parkinson's and working life, developed by the Oxford Brookes University together with the European Parkinson Therapy Centre (EuPaTh)
- Exchange of information and mutual support.