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Professor Bastiaan Bloem, MEP Marian Harkin and Parkinson's Association of Ireland CEO Paula Gilmore supporting the #UniteForParkinsons campaign in the European Parliament on 29 March 2017 Roomshot of the My PD Journey workshop at the European Parliament, 29 May 2017
The EPDA working with its partners at the European Parliament in March 2017.

What we want to achieve

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.

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
  • 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 and exploring the possibility for the creation of European Reference Networks (ERNs)
  • providing funding for projects that improve the lives of people with Parkinson's and their families.

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 of the challenges facing people with Parkinson’s and their carers.

For example:

  • 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.

For example:

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.

For example:

  • 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. 

For example:

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 to measure Parkinson’s symptoms.

The EPDA has organised three major events in Brussels in recent years:

 Vice-President of the European Parliament Mairead McGuiness speaking at the My PD Journey coalition event in April 2015

Parkinson' Disease Composite Scale summit at the European Parliament, February 2016

Bas Bloem, Marian Harkin and Paula Gilmore at the Composite Scale workshop, European Parliament, March 2017

APRIL 2015

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.

FEBRUARY 2016

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.

MARCH 2017

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.

Should you wish to learn about My PD Journey’s upcoming activities or get involved, please email secretariat@mpdj.eu.

Get involved

For more information about how to get involved with the EPDA's Parkinson's advocacy plans, contact advocacy@epda.eu.com.

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