In our final article in this series exploring the three central strands of Parkinson’s Europe’s new strategy, we look at the Awareness and Visibility pillar. Our work here will include shining a spotlight on the challenges facing the European Parkinson’s community, and harnessing the power of raising a united voice.
Uncovering the biggest issues around Parkinson’s in Europe today
It is no secret that the European Parkinson’s community faces a number of challenges. We know Parkinson’s is the fastest-growing neurological disorder in the world. Yet people with Parkinson’s continue to experience issues such as gaining access to medication, alongside living with the everyday impact of the condition. Often beneath the radar of the general public.
It is therefore one of our strategy’s core goals to use the voice of Parkinson’s Europe, and the Parkinson’s community, to place both the condition and its challenges in the spotlight.
Parkinson’s Europe’s Strategic Director Amelia Hursey says: “We want more people to be aware of the everyday life challenges people overcome, so the wider community can understand it better.”
Raising awareness of these issues is about more than improving general understanding. It is also about helping make decision makers aware of the work that needs to be done to improve care.
“As people progress through Parkinson’s, their medical care needs become more complicated. That is not necessarily being fully supported or achieved by healthcare systems as it stands. So raising awareness could help change that,” Amelia explains. “For the European Parkinson’s community, our goal is to reach a critical mass of people to push for better awareness by decision makers.”
Connecting people to the Parkinson’s community to raise awareness
Widening our communications reach will be a huge part of our plans to make Parkinson’s more visible, including our website, social media reach, and targeted campaigns.
Parkinson’s Europe Director of Communications Laura Vickers-Green says: “Part of raising awareness is making sure we are amplifying the voices of people living with Parkinson’s, rather than speaking for them.
We work with people across Europe to share their stories in podcasts, videos, articles, and advocacy campaigns to raise the profile of Parkinson’s, and show policymakers what people with Parkinson’s truly need to improve their lives.”
Being engaged on social media such as Instagram and Facebook, as well as newer platforms such as Bluesky and Threads allows us to both listen to a diverse range of voices from the Parkinson’s community, and also raise those voices up.
Laura explains: “It is important to remember the ‘social’ part of social media – our presence on these platforms allows us to connect with our community on a daily basis, and collaborate on far-reaching projects. For example, we’re currently working with a range of organisations and individuals on a really meaningful International Women’s Day collaboration. It work will raise awareness but also improve healthcare experiences for women with Parkinson’s. The power of social media is what helps us spread this message.”
Understand, engage, take action
As work from the three pillars links together, we will also be making the information gathered in our data and innovation work visible to stakeholders so they can better understand the impact of Parkinson’s.
Amelia explains: “If policy makers better understand, they are more likely to engage with us. Then we can help them address the problems experienced by people with Parkinson’s using European healthcare systems.”
Connection is crucial to amplifying the Parkinson’s community’s calls for positive change. It is also a challenge in itself.
“At the moment, there are these hubs and pockets of connection across Europe. But they are separate from one another, and so not enough noise is being made. If we can bring them together, our message becomes much harder to ignore,” says Amelia. “Connecting people with the world of Parkinson’s sounds simple, but is actually complicated because people are busy. However, we need more people to identify with and understand what is going on and that it is important to be involved.”
Reaching the decision makers who can bring about real and tangible change
We have also expanded our team to support our more strategic approach to raising awareness. Parkinson’s Europe’s new Advocacy & Campaigns manager will bring targeted skills to our strategy.
“They will lead the charge on the specific activities we do in this area, bringing expertise to make sure our advocacy activities are as impactful as possible,” Amelia says.
This combination of specialist skills and a strategic approach is essential to effecting actual change, she argues. “When it comes to raising the visibility of Parkinson’s, you need something meaningful to say to the audience – i.e. key opinion leaders and decision makers like MEPs or health commissioners. Your message needs to be worthwhile so they want to listen and understand. Because if you make a bad first impression, they are unlikely to listen to you again. We must get this right.”
We will also be taking every opportunity to raise the issues surrounding Parkinson’s at European parliament level, helped by our partnerships with other organisations and stakeholders such as EPF and EFNA.
For example, as part of our work with AbbVie, Amelia will be speaking at the “Europe’s leading role in healthcare: strategies for workforce, chronic diseases, and innovation” working group in March. The event, run by The Parliament magazine and AbbVie, will be hosted by MEP Sokol (EPP, Croatia) at the European Parliament in Brussels.
“Continuing our partnerships with EPF, EFNA and the EAN is another thing we are doing to raise awareness, and we are aiming to do more,” says Amelia. “This also includes working with the World Parkinson Coalition, and collaborating with the Michael J Fox Foundation. Making sure the mainland European voice is as loud as the US and British voices is important.”
Expanded volunteer network to share the message
Creating volunteer opportunities and growing our Engagement Network, will also play a key part. After a successful first year, we plan to expand the network in 2025, growing both the number of members and opportunities we share.
“A strong volunteer base is really key to underpinning all our strategic work,” says Amelia. “We want to ensure an even more strategic way of listening to and embedding the European Parkinson’s community’s voice in our work.”
Creating more volunteer roles that tie in with our strategy, and expanding the Engagement Network membership, will be key to this aim.
Hope for a better future
In keeping with our belief that a united community is strongest, our Awareness & Visibility pillar will work best by bringing people together.
Amelia says: “The power of increasing people’s knowledge should not be underestimated. In a world that seems very divided, it is more important than ever to bring people together. Because a connected community is the most important thing in the world to bring hope.”
To support our aims, please sign up to our social media platforms and share our work. Signing up to our Engagement Network will also help us strengthen connections among the Parkinson’s community. Look out also for calls for action, such as our work with AbbVie demanding better care in Europe.
“Nothing changes unless people push for it,” Amelia says. “Coming together as a collective voice, we will have more force to push with. And collectively we are stronger, so will have a greater chance of achieving real change.”
