Reflecting on World Parkinson’s Day | Global Update – Parkinson’s Life

We explore how organisations around the world marked World Parkinsons 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 Parkinsons Day is still not officially recognised as a global health day, says Veronica Clark, president of Parkinsons Europe.

Every year on 11 April, World Parkinsons 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 years event, Parkinsons Europe asked the community whether World Parkinsons Day should be officially recognised alongside days dedicated to conditions such as Alzheimers 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 Parkinsons 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.

Since the first World Parkinsons Day, 25 years ago, numbers of Parkinsons 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, Parkinsons Europe launched a social media campaign aimed at raising awareness in the lead-up to World Parkinsons 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 Parkinsons Federations awareness film Give Me My Time, which reflects on the time that people with Parkinsons need in their daily activities and social lives. The PD Avengers campaign Dopamine Dance Against Parkinsons 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, Parkinsons Europe Board Member Karl Wouters called for the parliament to address the Parkinsons pandemic.

Members of the community also contributed to a film montage that Parkinsons Europe compiled entitled What Parkinsons Means to Me which became the organisations most watched video ever on social media.

But what more can be done going forward to raise awareness of the condition, particularly outside of the Parkinsons community? Another new video from Parkinsons Europe asked people living with the condition and healthcare professionals to share their thoughts.

We really need to humanise Parkinsons 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 Parkinsons advocate Anthony Desjardins, who said: Most people dont know the many faces of Parkinsons and that the symptoms are not always visible. There needs to be more representation of people with the condition in mainstream media.

Meanwhile, Parkinsons advocate Nikita Krielaart encouraged others with the condition to share your story. Tell how life is with Parkinsons 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, Parkinsons 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.

Its still not too late to add your name to the growing list of voices who agree that World Parkinsons Day should be made an official health day. Giving World Parkinsons Day the official recognition it deserves will help increase the impact of its message.

Lead image: Drutvo TREPETLIKA presentation at the Slovenian Parliament on World Parkinsons Day. Credit: Miran Juri

For more information aboutParkinsons advocacy, visit the Parkinsons Europe website.

Read more:

Putting World Parkinsons Day on the map

Introducing the Parkinsons Manifesto for Europe

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Reflecting on World Parkinson's Day | Global Update - Parkinson's Life