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Know the signs, act early

Disease awareness case study: improving European awareness of daily life with Parkinson's disease

Parkinson's is the second most common degenerative disorder of the central nervous system. In 2008 there were 3.16m people with Parkinson's in the US, Japan, France, Germany, Italy, Spain and the UK, and this will increase as the population ages. Parkinson's symptoms include pain, fatigue, depression and impaired movement and speech, as well as tremor.

EPDA has an ongoing awareness-raising campaign, but existing materials focused on late-stage treatment. A recent study showing that early treatment can slow Parkinson's disease progression by up to 38 per cent over 18 months has led to an increased focus on early diagnosis and treatment.

Lundbeck and Teva, working with Burson-Marsteller (B-M), shared EPDA's objectives to increase understanding of the benefits of early treatment among patients and carers, and it was agreed that the companies would support EPDA's campaign by funding B-M support.


The poster for the 'Life With Parkinson's' Campaign
The campaign aims to improve understanding and awareness of Parkinson's on daily life


1. Develop a comprehensive, multi-language resource for the 43 EPDA member associations to implement national awareness campaigns in 2009-2010.
2. Launch to healthcare professionals (HCPs) and EPDA members at the Movement Disorder Society (MDS) congress, Paris (June 2009) with publicity materials in English and French and generate traffic to the campaign site (target: 800 visits in first month).
3. Develop a compelling media story for EPDA and national Parkinson's associations:
• Demonstrate lack of understanding of Parkinson's in Europe
• Bring Parkinson's to life through personal video testimonies (target: three)
• Gain professional endorsement for the campaign (target: two)
• Disseminate to EU level media (coverage target: 20 pan-EU media).

EPDA and B-M assigned roles and responsibilities to maximise use of EPDA expertise and resources, with B-M support focused on other activities. The following campaign resources were developed:

Life with Parkinson's booklet:
• A comprehensive resource to improve understanding and raise awareness of the impact of Parkinson's on daily life. Based on existing materials, content was completely revised to reflect the latest medical research and a new section was included to aid recognition of early symptoms so medical advice can be sought as soon as possible
• Currently in English, German, Hungarian, Spanish, French, Italian and Turkish. Greek, Norwegian, Swedish and Romanian will be added shortly.

Perceptions of Parkinson's survey to develop strong media angles:
• Online survey of 5,010 people from UK, France, Germany, Italy and Spain to discover how much they knew about Parkinson's and identify knowledge gaps.

Media materials:
A comprehensive range was developed including: a press release; a Perceptions of Parkinson's survey executive summary; EPDA factsheet; Parkinson's disease backgrounder and factsheet; seven video interviews with patients, carers, KOLs and EPDA spokespeople. Materials were available via the newsroom at the MDS congress, distributed directly to target EU-level media and via The Newsmarket, and posted to a social media release.

The campaign launch is in two stages: to EPDA member associations, HCPs and pan-EU media in June 2009, followed by country specific launches by EPDA member associations in 2010.  

Results and evaluation (launch stage 1)
Campaign materials were developed on time and within budget; currently in seven languages, soon to be 11.

All publicity materials were distributed to delegates at MDS congress. There were 926 visits to the campaign website between June 8 and July 7, 2009 (target: min 800). Perceptions of Parkinson's survey results showed that knowledge in Europe is low, providing strong media stories. Over half of the people taking part could not identify Parkinson's as a neurological condition that affects movement; and three quarters did not recognise the inability to move (a cardinal symptom) as a problem for people with Parkinson's.

Twenty nine articles (target: min 20) were generated in pan-EU media within first week of June 2009 announcement. 96 per cent of this media coverage was online, reflecting the international target media list. All coverage was positive and included at least the top two key messages. The social media release received 168 hits and 46 video clips were ordered from The Newsmarket by 109 media outlets. NB, only online media monitoring was carried out as budget was prioritised to resource development. National launches are planned for 2010.

Susanna Lindvall, Vice President, EPDA, said: "All the individuals and organisations involved worked seamlessly to develop the comprehensive Life with Parkinson's campaign. The successful launch to HCPs and European media exceeded our expectations." 


Client study details

Client: EPDA, H. Lundbeck A/S and Teva Pharmaceutical Industries Limited
Agency: Burson-Marsteller
Campaign: Life with Parkinson's
Timescale: January 2009 to July 2009

25th February 2010


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