Sharing expertise, knowledge and experience
We work closely with our stakeholders to share good practices from around Europe and the world, particularly high-quality Parkinson’s-specific initiatives, resources and information.
Connecting the Parkinson’s community
The EPDA's network of partners and supporters includes:
- Parkinson’s organisations on a national, European and global level
- healthcare professionals from around the world
- people with Parkinson's, their families and carers
- the treatment industry
- policymakers and decision makers on a national and European level
- European health-related umbrella organisations.
We are perfectly placed to work with our network of partners and members to:
- Form partnerships that directly benefit people with Parkinson’s and their families.
- Highlight national and regional best practices at a European and global level with the aim of establishing higher-quality standards of Parkinson’s care and reducing inequalities.
- Provide a forum where Parkinson’s-related organisations and individuals can work, share and innovate together.
- Help our members play their part in the European legislative consultation process.
- Share opportunities for our members to participate in European Parkinson’s-related educational events and activities.
- Promote our members’ activities to Parkinson’s stakeholders across Europe and worldwide.
EPDA Members' Meeting
The EPDA Members' Meeting and Annual General Assembly are held every year in October or November in the UK.
This two-day event is the moment for all our member organisation representatives to gather together and meet the EPDA Board and Team, as well as treatment industry representatives and other important stakeholders, in a welcoming and friendly setting. The meeting features interactive sessions – often involving external experts – on important topics relevant for the European Parkinson's community.
The Annual General Assembly is the occasion for member organisation representatives to discuss, decide and vote on important matters relating to the EPDA governance, internal organisation and work strategy.
Offering access to online resources
We have developed some online information resources that are exclusive to our member organisations. These include:
EPDA members' newsletter
Delivered to our members' mailboxes on a quarterly basis, our newsletter provides updates about important initiatives and events organised by the EPDA and by our members, including:
- awareness campaigns
- data collection projects
- conferences and meetings
- new resources
- World Parkinson's Day campaigns and activities.
EPDA Members' online Forum
The EPDA Member's Forum is an online community tool open to all our members. It is the perfect platform to:
- publish information about your organisations' campaigns, activites and events
- share resources that may be useful to the European Parkinson's community
- ask other organisations for help and advice
- establish collaborations and partnerhsips.
The online forum is managed and moderated by members of the EPDA Board and Team, and it is meant to encourage a two-way communication between the EPDA and our members, as well as among our members' community.
In addition, our websites are designed to keep the entire Parkinson's community up to date on the latest disease-related news, research and information, as well as the EPDA's own projects, activities and resources. Discover the following online resources:
Introducing the largest European online Parkinson's library. From identifying symptoms and offering advice on how to live a full live to the latest treatments and therapies, find everything you need to know about the condition here.
Please note: to make our information available world-wide and to as many people as possible, Google Translate has been added to our website and the content is now available in more than 100 languages.
Our award-winning online magazine aims to deliver quality content to the global Parkinson’s community. It is a platform to share inspiring stories, essential resources and latest research about Parkinson's.
The EPDA encourages active involvement from all of our members on the above projects. Email firstname.lastname@example.org for more information.
Contributing to Parkinson’s projects
The EPDA works on a number of projects and activities involving different stakeholders – including national Parkinson's organisations, treatment industry partners, healthcare professionals and research institutions – from all over Europe. We constantly encourage the involvement of our member organisations into activities that will benefit the national and European Parkinson's communities. Recent examples include:
A vital part of our work is data collection – gathering evidence from people with Parkinson’s and their families about what constitutes a good quality of life. We have 20 years’ experience understanding people’s unique journeys, and no other organisation is doing this on the geographical scale that we are. We closely involve all of our members in each of our data collection projects, and we share the results with them too; the most recent example is the 2019 European survey on the challenges of Parkinson's carers.
The Parkinson's Disease Composite Scale
The Parkinson’s Disease Composite Scale (PDCS) is a simple new rating scale that measures the severity of symptoms experienced by people with Parkinson’s in a timely way. We are currently working with neurological and clinical bodies, policymakers, and member organisations to roll out this new tool across Europe, and beyond.
YOPD focus group
The EPDA held a series of events at the European Parliament in 2018 with the aim of advocating at EU level for greater recognition of young onset people with Parkinson’s (YOPD). The EPDA has since been acting as a facilitator for a series of periodic calls and meetings among a group of European people with YOPD, involving representatives from many of our member organisations.
We are extremely pleased to share with you the videos of the three winning applications for the 2021 EPDA members grant. We are very much looking forward to seeing those projects come to life in the near future and will continue to share updates with you.
The winning organisations were as follows:
Associação Portuguesa de Doentes de Parkinson (APDPk) - Ping-pong exercise program in Parkinson’s
Malta Parkinson's Disease Association (MPDA) - Specialist training in Parkinson's Disease
Društvo Trepetlika - Prep school for the newly diagnosed