eurordis.org
Rare Disease Day Lara CHAPPELL Communications Director
[email protected]
21/10/2014
eurordis.org
2
Rare Disease Day 2015 • Theme – Living with a Rare Disease
• Slogan – Living day-by-day, hand-in-hand
• Daily life of people living with a rare disease and their families • Bring forward the discussion about patients, families, patient organisations, healthcare professionals… core group of carers. • Call to action – solidarity! 21/10/2014
eurordis.org
3
Timeline for 2015: Key dates • September 30, 2014 – Webinar – The Spirit of Rare Disease Day
• November 20, 2014 – Website launched, infopack, media materials and visuals available – Webinar about using the back-end of website
• December 2014 – Poster available
21/10/2014
• January 2015 – Press release – Mass emailing for Join and Raise hands
• Mid-February – Video launch
• February 24, 2015 – EURORDIS Policy event, Brussels
• February 28, 2015 – Rare Disease Day
eurordis.org
4
Communications tools available • Theme and slogan • Website – Contact info for NA’s – Events
• Info Pack • Media Kit • RDD Ambassador
• Poster • Video • Facebook and twitter visuals • Email banner
– Use of name and image
21/10/2014
eurordis.org
5
Ambassador for 2015 • Sean Hepburn, son of the late Audrey Hepburn • Audrey Hepburn died of a rare form of cancer belonging to a group of cancers known as pseudomyxoma peritonei (PMP) • If you would like to use his name and image – EURORDIS provides a biography, photos, video and quote which can be used on websites and on printed materials related to Rare Disease Day – You can translate his quote and subtitle the video – Media interviews are possible • English, French, Italian, Spanish and a little Portuguese
21/10/2014
eurordis.org
6
Your comments on last year’s tools? • + 75% visits in 2014 – 180.000 unique visits
• 50.000 visits on Rare Disease Day • Mobile users 40%
21/10/2014
eurordis.org
7
Events in the forefront
21/10/2014
eurordis.org
8
Country or region page
21/10/2014
eurordis.org
9
NA contact information
21/10/2014
eurordis.org
10
Events page – contact information
21/10/2014
eurordis.org
11
Media Kit contents • New media section on the website • Other useful documents?
21/10/2014
eurordis.org
12
New developments! Backend • Easier navigation for associations to enter information • Can add an event without going through back-end
• Friends page improvements • Don’t forget! Pictures and videos are welcome
21/10/2014
eurordis.org
13
New tools! Website for tablet
21/10/2014
eurordis.org
14
New tools!
21/10/2014
eurordis.org
15
New tools! And smartphones
21/10/2014
eurordis.org
16
New tools! Instructive Webinars • Spirit of Rare Disease Day (recording is on our website)
• How to use the backend of the Rare Disease Day website (in November)
21/10/2014
eurordis.org
17
RDD 2015 Official Video • Carlo Hintermann (Italian producer, award winning documentary) – offering his time and creation • Script currently being finalized • Production to be held in Rome in November. • Delivery of 1’30 and 30 second version in December • Dissemination to NA’s and world in January • Voice over or subtitling for translations
21/10/2014
eurordis.org
18
EURORDIS Policy Event in Brussels • Living day-by-day, hand-in-hand – Testimonies of daily life from patients and caregivers
• Where and when? – Residence Palace – Tuesday, February 24, 2014
• Hybrid event – Public audience in room and live followers on-line who will participate with questions • RareConnect communities and moderators will participate LIVE on-line
21/10/2014
eurordis.org
19
What do we need from you? • Show that you are part of an international movement – Link to rarediseaseday.org – Use logo – Use communications materials when possible
• Famous people, politicians who have participated locally
21/10/2014
• Event contents – Event in the forefront – Send in photos and videos to bring real-life examples and faces to the country and event pages
• Disseminate the video – Link from your website
eurordis.org
20
Join and Raise Hands initiative - Encouraging general public to get involved
21/10/2014
eurordis.org
21
Rare Disease Day 2016 • • • • •
February 29, 2016 Over-arching theme for 4 years? Theme? Key upcoming advocacy issues? Tools?
21/10/2014
eurordis.org
22
