We provide an authoritative voice on the impact of Parkinson’s across Europe and advocate for policy change that benefits the European Parkinson’s community.
The OnHOME Alliance – November 2024
We’re proud to be an original member of the OnHOME Alliance: a group of patient organisations, healthcare professionals, and digital health advocates which are determined to advocate for all EU Member States to allow their patients the choice to obtain their prescription medicines online and get them delivered at home by registered pharmacies.
Our Director General, Russell Patten, was a panellist at the launch event in Brussels on 29 October, which outlined the Alliance’s objective of building momentum for a collaborative, multi-stakeholder approach to modernising European healthcare.
Central to the OnHOME Alliance’s mission is a call to action for the EU and Member States to take necessary steps to expand online access to prescription medicines, particularly in light of the ongoing revision of the General Pharmaceutical Legislation. This could be achieved across the EU by amending Article 172 of the European Commission’s proposal for the Pharmaceutical Directive, which regulates the sale of medicinal products at a distance to the public. Several Member States, including Denmark, Estonia, Finland, Germany, Lithuania, Netherlands, Portugal, and Sweden, have already permitted online access to prescription medicine. The Alliance is calling for all Member States to uphold the principles of necessity and proportionality when setting conditions for the distance sales of medicinal products.
Read a summary of the discussions which took place at the launch event:
Call to Action of Concerned Stakeholders on the Implementation of the EU HTA and Joint Clinical Assessment for ATMPs
We are a proud signatory of this Call to Action to urge the members of the HTA Coordination Group and its relevant subgroups, and JCA assessors to recognize all types of available evidence including single-arm trials and RWE, and to use the JCA report to describe, rather than judge, any resulting uncertainty as to the treatments’ benefits, as called for by the HTA Regulation.
Please find the full Call to Action below as a PDF:
Download the Call to Action
European elections 2024
This year the European elections will run from 6 to 9 June and many of us across Europe will be casting our votes. The elections hold significant implications for the Parkinson’s community on issues such as funding for research, cross border healthcare, patients rights and much more.
As the time to vote draws close, Parkinson’s Europe takes a moment to consider how the results might impact those living with Parkinson’s – read more in our Parkinson’s Life article.
To find out more about the election process and how you can vote, visit the European elections website
If you are interested in getting more involved, check out the campaign toolkits created by the European Federation of Neurological Associations (EFNA) and the European Patients Forum (EPF)
And if you want to monitor the results as they come in, visit the European election results website
After the elections have taken place, Parkinson’s Europe will be creating resources for individuals and organisations to contact their newly elected MEPs. More information will be available here soon!
Why is Parkinson’s Europe involved in political advocacy?
Parkinson’s represents a serious challenge to the European Union (EU)’s objective of achieving sustainable healthcare systems and promoting healthy social and economic development across the continent.
We believe that much more can be done to overcome key hurdles to effective diagnosis, treatment and care of Parkinson’s at the European level.
As such, one of Parkinson’s Europe’s strategic aims is to increase political awareness of Parkinson’s as a priority health challenge at the European and national levels, engaging with key EU policymakers and stakeholders to build political support for concrete policy change.
Read about our policy priorities in more detail in our Parkinson’s manifesto.
Our Political Advocacy Group
Parkinson’s Europe’s Political Advocacy Group (PAG) is made up of a mixture of our Board members and representatives from our member organisations.
The group works together to identify priority areas that should be at the heart of our advocacy work.
Our current advocacy goals
Pesticides
Pesticides have long been linked to potential health and environmental harm and public health risks including cancer, Parkinson’s and other neurodegenerative conditions.
We have been actively campaigning to raise awareness for this issue and urging EU policymakers not to renew the licence for the use of pesticides such as glyphosate.
Other advocacy goals
TBC later in 2024
Parkinson’s Europe advocacy activities
As well as developing advocacy campaigns, we also aim to influence change in the EU in the following ways:
Strategic alliances
We work closely with a number of other European 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.
Survey of EU policymakers
Our 2020 survey of EU policymakers gathered valuable data on how Parkinson’s and Parkinson’s Europe are perceived in Brussels, and revealed a worrying lack of knowledge and understanding about the condition. This means that the first step in any of our advocacy work with policymakers going forward will be to educate and inform.
Advocacy toolkit
Our advocacy toolkit 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.
Advocacy toolkit (English)
Guía de la EPDA para Desarrollar una campaña de incidencia política (Español)
Medicines Shortages Guidelines
These guidelines have been developed by Parkinson’s Europe to assist patient organisations across Europe deal with shortages of Parkinson’s medication before it happens, when it happens and after it has happened.
Parkinson’s Europe Medicines Shortages Guidelines