Uniting the Parkinson’s community across Europe has always been a huge part of Parkinson’s Europe’s focus. But in December 2023, we fortified our efforts further with the launch of an exciting new project – the Parkinson’s Engagement Network.
One year on, we take a look at how the network has galvanised people across Europe to improve the lives of people with Parkinson’s, and plans to take it to the next level in 2025.
Sign up to the Parkinson’s Engagement Network
The Engagement Network brings people from all over Europe together, offering them opportunities to help shape the future of how Parkinson’s is managed and treated, and work towards finding a cure. And with nearly 600 people joining in the first 12 months, it’s clear we’re not alone in believing that together, we’re stronger.
Building an inclusive Parkinson’s community
Parkinson’s Europe Research Manager Amelia Hursey says the network was launched to streamline and build upon the work the organisation was already doing.
“It allows us to consistently reach out to individuals across Europe, sharing opportunities for members to take action in areas of interest to them,” she says. “It’s not just for people with Parkinson’s but also their partners, family members, supporters, healthcare and Parkinson’s professionals. It’s about engaging with everyone who is invested in this journey, fighting the Parkinson’s battle.”
While the network currently extends mainly across Europe, members have signed up from 55 countries to date, as far afield as South America, the USA, and Africa.
When signing up, members can express their interests in any of six areas (from research to webinars, surveys and wellbeing opportunities), to help tailor the information they receive. They are then sent opportunities and calls to action, inviting them to take part in projects and events aiming to bring about change.
Proactive and engaged
New members are signing up to the network daily, and they’re prepared to take action. “It’s an active group,” Amelia says. “The impact of the number of people who’ve stepped towards every call to action has been phenomenal. No ‘calls to action’ have walked away disappointed.”
The positive response from those signing up to the network is clearly spelled out in data. In the first 12 months alone:
- 583 people from across the globe have signed up to the network
- We’ve shared some 43 ‘calls to action’
- There include 14 insight and knowledge-sharing opportunities, nine webinars and workshops, and five advocacy activities – to name just a few
- The emails sent out to share these opportunities see an unusually high open rate (71.7%), reflecting the engaged, active nature of members.
Person with Parkinson’s and network member Cathy Molohan says: “I’ve used the engagement network several times myself and I really think it is a powerful tool that connects various Parkinson’s related projects throughout Europe. These are projects that I wouldn’t have known about otherwise.”
Year of success
Highlights of the past year include:
- Work with our industry partners, including a workshop invitation for people with Parkinson’s supporting the development of a clinical trial for a new Parkinson’s medication. The response to the request was so successful the company went on to sign up six participants, rather than the five they originally asked for.
- Opportunities shared on behalf of our member organisations included France Parkinson’s ‘Parlons Recherche’ events which featured live translation. Here we helped extend the invitation to a larger pool of non-French speakers.
- Network members were also invited to take part in a survey by Irish association Early Onset Parkinson’s Disease Ireland about travel experiences as a person with Parkinson’s. Opportunities such as these demonstrate how useful the network can be in granting organisations access to a larger and wider-ranging audience, and targeting their reach.
- Other opportunities to support research included a survey and webinar about sleep issues for PD Avengers, and contributing to a scientific advice procedure run by the European Medicines Agency.
- Trinity College Dublin researcher Julia Hirschwald used the network to recruit participants for a survey on swallowing difficulties for people with Parkinson’s. She says: “If you are looking for help to reach people living with Parkinson’s then I can highly recommend reaching out to the Engagement Network. It is very straightforward and the people working for Parkinson’s Europe are extremely friendly and supportive.”
Parkinson’s Engagement Network plans for 2025
With such a successful first year, Parkinson’s Europe says growth is on the agenda for 2025, expanding the network even further.
Amelia says: “We want to reach a critical mass of voices from people affected by Parkinson’s in Europe, to level up with the global Parkinson’ s picture. Mainland Europe is not connected in the same way the US or UK is, and we want to increase that visibility for everyone with Parkinson’s in Europe.”
“So next year, we want to see the continued growth of the number of Engagement Network members,” says Amelia. “Having 500 members is excellent. But this year was phase one, and we’re excited about seeing how far the Engagement Network community can grow.”
Other 2025 plans for the Engagement Network include sharing testimonials from those who have responded to a call to action, and looking to help grow members’ skillsets. “It’s a core support factor of our new strategy, and a key part of how we’ll empower as many people as possible in Europe” Amelia explains.
Sign up for the Parkinson’s Engagement Network
Would you like to be involved? If you haven’t signed up yet, now is the time!
Help shape change in the future of living with Parkinson’s, and get involved in our plans for 2025 by joining the Parkinson’s Engagement Network here.
