rare disease day 2017 - eurordis.org
TRANSCRIPT
![Page 1: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/1.jpg)
eurordis.orgeurordis.org
Lara Chappell, Communications Director
Rare Disease Day 2017
106/06/2016
![Page 2: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/2.jpg)
eurordis.org
Rare Disease Day and the CNA
06/06/2016 2
• Recap of 2016
What worked? What can be improved?
• Theme for 2017
• Process of decision for 2017 and timeline
• Feedback
Webinar subjects?
Fundraising, corporate partners
Other questions?
![Page 3: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/3.jpg)
eurordis.org
Rare Disease Day – global and growing!
06/06/2016 3
Events in over 80 countries – 10 new countries
Video translated in 34 languages
Over 300.000 video views
on social media
Website visits increased by
15%
Over 7 million people reached on social media
Springboard to advocate to
policy makers
Thank you for your participation!
![Page 4: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/4.jpg)
![Page 5: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/5.jpg)
RARE
DISEASE
DAY IN 85
COUNTRIES!
![Page 6: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/6.jpg)
![Page 7: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/7.jpg)
![Page 8: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/8.jpg)
Collectively over 300,000 views (youtube and
facebook)
Over 4,500 shares on facebook!
![Page 9: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/9.jpg)
eurordis.org
Recap of 2016
06/06/2016 9
• Marked by Publicis LifeBrands International
New way of organising campaign
« Creative concept » based around the video
Stronger visual identity
Communications materials linked – visuals taken to a new
level
Website user experience – web marketing improvement
• Result = more unified message!
![Page 10: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/10.jpg)
![Page 11: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/11.jpg)
Lithuania
South Carolina
Mauritius
ArabicGerman
y
Tanzania
![Page 12: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/12.jpg)
eurordis.org
Process of decision and timeline
06/06/2016 12
• CNA decides year by year the slogan of Rare
Disease Day
A message which resonates on every continent
• Steering committee – currently 8 members
proposes the theme
adapts script
validates visuals
![Page 13: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/13.jpg)
eurordis.org
2016-2019 – Themes for Rare Disease Day
06/06/2016 13
Patient Involvement
2016 Patient Voice
2017
2018?
2019?
![Page 14: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/14.jpg)
eurordis.org
2016-2019 – Themes for Rare Disease Day
06/06/2016 14
Patient Involvement
2016 Patient Voice
2017 Research
2018?
2019?
![Page 15: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/15.jpg)
eurordis.org
Timeline – year round preparation
06/06/2016 15
• March-April –your
participation!
• May – Theme
announced
• June – Creative
concept voted via email
• July –August – Script,
visuals, video
production
• September – video
translations, finalize
different versions
• November 20 –
Website launched
100 days of campaign
- video launched
• 22-23 February –
Multistakeholder
symposium, Brussels
• 28 February – Rare
Disease Day
![Page 16: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/16.jpg)
eurordis.org
Changes this year
06/06/2016 16
• CNA voting a full concept
Publicis LifeBrands will propose slogans to steering
committee once the concept is voted
• Earlier timeline
Video teaser, visuals ready with website launch
• Let’s reach a wider public, but not lose our grass
roots patient-driven feeling
• Theme Ideas for 2018?
![Page 17: Rare Disease Day 2017 - eurordis.org](https://reader034.vdocument.in/reader034/viewer/2022042421/6260bb6def6a4521e550d077/html5/thumbnails/17.jpg)
eurordis.org
Feedback
06/06/2016 17
• Questions?
• Webinar subjects?
• Private company funding events?