An interview with the team from Parkinson’s Europe on July 24, 2023 by George Ackerman, Ph.D, J.D.
Biography
Parkinson’s Europe
Our vision
That people with Parkinson’s and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life.
Our mission
We work and campaign with people with Parkinson’s, their caregivers, families and supporters across Europe to ensure their voices are heard and listened to. We do this by advocating, raising awareness and working with other global Parkinson’s organizations to provide current information, share good practices, and highlight research that will benefit the whole Parkinson’s community.
Our strategic goals
Goal 1
To provide people with Parkinson’s, their families, and caregivers the right information at the right time to help manage their treatment, care, and wellbeing.
Goal 2
To help advance good practices in treatment, care, and wellbeing by acting as a hub for the exchange of information between local, national, European, and global organizations operating in the field of Parkinson’s.
Goal 3
To facilitate better understanding of Parkinson’s among healthcare professionals and political decision makers – and to highlight gaps/discrepancies that exist in treatment and care.
Goal 4
To support and facilitate collaboration between people with Parkinson’s and those stakeholders involved in clinical research.
Please tell me a little about Parkinson’s Europe background.
Parkinson’s Europe has been around for over 30 years, and we were set up because we saw a gap in the representation of the Parkinson’s Community at a European level, where many European policies are made. We also wanted to ensure that Parkinson’s organizations in different European countries can share information with each other and have a voice in the EU.
Can you tell me more about Parkinson’s Europe goals?
Our main goal as a membership body representing Parkinson’s organizations in Europe and beyond is to ensure they have the support they need to help their members – people with Parkinson’s. Our work consists of bringing member organizations together to share information – and to tell us what they are doing and how Parkinson’s affects their communities – so we can use this information to build data and share it at a policy level. We also act as a hub of information exchange so that people with Parkinson’s can hear about new research trials that they might be able to take part in – and general information that might be useful to help them live a better life. Our website www.parkinsonseurope.org is a hive of information to help people with Parkinson’s live a more comfortable life.
What is Parkinson’s Europe passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Like everyone else – our real wish is for Parkinson’s to be cured. But until that happens our vision is that people with Parkinson’s and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life.
What type of training and how long are the Parkinson’s Europe programs?
The training we provide is mainly through some of our partners in the Parkinson’s Community. For example we run a an Exercise Cast (see https://www.parkinsonseurope.org/latest/resources/epda-exercisecast/) The program started as a response to the lockdown situation created by the COVID-19 pandemic, and is run by our President and respected physiotherapist Josefa Domingos, together with speech and language therapist John M. Dean,. They produced this series of videos to help people with Parkinson’s exercise from the comfort of their own homes.
What effect can Parkinson’s Europe have on an individual with Parkinson’s?
Classes like these not only help individuals with Parkinson’s feel connected to others in a similar situation outside their home, but also tangibly help them to use exercise to relieve some of their symptoms.
What would you like to see as a future goal for Parkinson’s Europe programs?
We are a very small organization and do not have the funds to do many training programs, however it’s our wish to help in any small way we can, and we will continue to look for opportunities where we can provide help and support for the Parkinson’s community.
What events do you participate in?
We try as much as possible to participate in events that raise awareness of the needs of people with Parkinson’s at a global level and to highlight the disparities in the treatment and care of Parkinson’s between different countries. This year we participated in the World Parkinson’s Congress 2023 in Barcelona and met many influential people in the field as well as people with Parkinson’s themselves. We also participate in many global neurological events. Every year we promote World Parkinson’s Day which we started in 1997 (co-sponsored by the World Health Organization) to commemorate the birthday of Dr James Parkinson.
How does Parkinson’s Europe also assist the caregivers?
We don’t provide direct support for caregivers; however, we are very mindful of their needs and often amplify their voice so that their needs are represented. For example, we undertook a pan-European survey amongst carers from around Europe collecting their views about the kind of impact caring for a person with Parkinson’s has on their lives. It revealed that policies, health systems and society at large are not doing enough to support this group of people which provide vital care to people with Parkinson’s. You can find out more about that here: https://www.parkinsonseurope.org/get-involved/caring-and-parkinson-s/
How can someone get in touch with Parkinson’s Europe? What is your website?
We don’t provide a helpline but there is plenty of valuable information on our website (www.parkinsonsEurope.org) about how to live well with Parkinson’s.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
We have worked to champion the needs of the Parkinson’s Community for over thirty years, and we will continue to do so until Parkinson’s has been eradicated. The objectives of our work are to campaign with people with Parkinson’s, their caregivers, families, and supporters across Europe to ensure their voices are heard and listened to. We do this by advocating, raising awareness and working with other global Parkinson’s organizations to provide current information, share good practices, and highlight research that will benefit the whole Parkinson’s community.
Photo:
Parkinson’s Europe staff members at World Parkinson’s Congress 2023.
From left to right: Dom; Amelia; Natalie; Fiona and Francesco