For more information about Parkinson’s advocacy, visit the Parkinson’s Europe website.
Increasing the profile of World Parkinson’s Day
Author: Sarah McGrathPublished: 11 May 2023
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We explore how organisations around the world marked World Parkinson’s Day this year and why improved awareness and recognition of the event are crucial for those in the community
“Many people are unaware that World Parkinson’s Day is still not officially recognised as a global health day,” says Veronica Clark, president of Parkinson’s Europe.
Every year on 11 April, World Parkinson’s Day invites people from around the world to unite to raise awareness of the condition – and to celebrate the work being done in the community. However, despite having launched way back in 1997, it is not mandated by the World Health Organisation (WHO) Member States as an “official” global public health day.
Veronica explains that, as part of an online campaign focusing on this year’s event, Parkinson’s Europe asked the community whether World Parkinson’s Day should be officially recognised alongside days dedicated to conditions such as Alzheimer’s and cancer. “We were delighted that more than a thousand people across Europe agreed with us,” she says, “and it inspired us to consider doing more to ensure it gets formal recognition in the future.”
In line with their Parkinson’s Manifesto for Europe, the organisation hopes to increase engagement with regional and global health bodies to raise awareness of the event – and address the key issues that matter to those impacted by the condition.
Campaigning for change
“Since the first World Parkinson’s Day, 25 years ago, numbers of Parkinson’s cases across the world have doubled at a faster pace than any other neurological condition,” Veronica says.
So, to underline the pressing importance of recognising the condition, Parkinson’s Europe launched a social media campaign aimed at raising awareness in the lead-up to World Parkinson’s Day – as well as an online map featuring the global events and activities taking place throughout April. The map showcased almost 100 events across 40 countries.
Among the initiatives featured was the Spanish Parkinson’s Federation’s awareness film ‘Give Me My Time’, which reflects on the time that people with Parkinson’s need in their daily activities and social lives. The PD Avengers campaign ‘Dopamine Dance Against Parkinson’s’ was also a hugely popular campaign that encouraged those living with the condition – as well as their friends and loved ones – to dance in the face of the condition.
Meanwhile, Dutch and Flemish neurologists, patient organisations and caregivers took to the European Parliament as representatives of the condition; at the event, Parkinson’s Europe Board Member Karl Wouters called for the parliament to address the ‘Parkinson’s pandemic’.
Members of the community also contributed to a film montage that Parkinson’s Europe compiled entitled ‘What Parkinson’s Means to Me’– which became the organisation’s most watched video ever on social media.
“Parkinson’s needs more funding, research and better treatment”
But what more can be done going forward to raise awareness of the condition, particularly outside of the Parkinson’s community? Another new video from Parkinson’s Europe asked people living with the condition and healthcare professionals to share their thoughts.
“We really need to humanise Parkinson’s and the image of it to make it more inclusive,” said Matt Eagles, head of patient engagement at healthcare communications agency Havas Lynx Group.
This outlook was echoed by Parkinson’s advocate Anthony Desjardins, who said: “Most people don’t know the many faces of Parkinson’s and that the symptoms are not always visible. There needs to be more representation of people with the condition in mainstream media.”
Meanwhile, Parkinson’s advocate Nikita Krielaart encouraged others with the condition to “share your story. Tell how life is with Parkinson’s – the positive things but also the negative things”.
Ultimately, it comes down to increasing understanding and awareness while also improving the resources dedicated to tackling the condition. “Across Europe and the wider world, Parkinson’s needs more funding, research and better treatment to provide a better quality of life, and ultimately a cure, for people with the condition,” says Veronica.
“It’s still not too late to add your name to the growing list of voices who agree that World Parkinson’s Day should be made an official health day. Giving World Parkinson’s Day the official recognition it deserves will help increase the impact of its message.”
Lead image: Društvo TREPETLIKA presentation at the Slovenian Parliament on World Parkinson’s Day. Credit: Miran Juršič
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