Rare Disease Day 2013

Planning for 2013

Theme / Slogan / Message

Common features

Media ideas

Website & Social Media

Advocacy event in Brussels

Theme & Slogan

Solidarity

Cross border cooperation

International dimension

Messaging “Fighting diseases which affect only a few people in each country and for which expertise is scarce and scattered requires cross-border cooperation.”

Research (multicentred CT, multi-country research teams, IRDiRC)

Health policy (ERNs, CBHC, NPRD)

Patients & families all over the world – not alone!

(page 6 Info Pack)

You can send corrections/suggestions until Nov 7

Common features

Symbolic action – Joining hands

Official Video

Raise & hold hands for RDs Hundreds of people responded to our call to Raise

& Hold hands to show Solidarity with rare disease patients

7 National Rare Disease Alliances joined & raised hands at 12 GMT on Feb 29

+90 photos from +20 countries

uploaded to rarediseaseday.org

Joining hands around the world!

Medical students in Mexico

Event in Croatia

Military in Portugal Conference in Lithuania

Pursuing action + upgrade Works well with RDD logo

+ solidarity

Shows visually: support,

int’l mobilisation

Simple, no budget

Can be integrated into existing activities

NA to organise photo shoots in their countries, ideally infront of a recognisable landmark and send to rarediseaseday@eurordis.org (before or day)

Anyone to raise & hold hands upload photo via the website (before or on day)

Digital Awareness Campaign

Show your support for the Day

Upload a photo joining hands

Indicate City-Country

Send a personal message

Share on FB and Twitter

Show on interactive map

on website

Photo wall on Flickr

FB Application Encourage others to join hands through FB

Message

The Day

Video Clip

Share

Students University of Porto – free of charge!

Debra UK – ‘peel here’ awareness digital campaign

Official Video 2-min promo

30 sec for TV

Italian filmaker who already did a movie on a rare disease: XP (Xeroderma Pigmentosum)

Stop motion animation and live action

3 patients living in Rome (Simona /UNIAMO)

Message: there are +6000 RD/PLWRD are connected across the globe / solidarity has not borders

EURORDIS small budget + volunteer work

Push through Youtube/ emailing campaign /website/ social media (ability to embed it on your websites)

Media Ideas Metro newspaper

PH Portugal in 2012 (banner + editorial/interview)

paying option – small reduction

1,000 to 70,000 EUR

RD Supplement Media Planet

RareDiseaseUK/The Independent

NORD/The Washington Post

CORD/National Post

RD supplement on RDD It works and there is interest

Convincing the paper to run it is easy

In high class, serious newspapers

Editorial to create awareness and talk about advocacy

NA help with PO and industry contacts but all work is done by them!

NA can be as active in the editorial content part as they want to be...

They will start building the editorial materials in January (possibly late December).

Website 2013 – launch Nov!

Website Country pages

Multiple access in countries where + than one organiser

Sharing events

Uploading files directly

Downloads

Poster (recalls the official video)

Logo/banner/slogan/email signature/flyer

Info Pack

Tell your story – upload photos (Flickr) & videos (YT)

Joining hands digital campaign

RDD mailing list

Social media facebook.com/rarediseaseday

‘Like’ the RDD Facebook page -15,000 Likes to date

twitter.com/rarediseaseday

Follow Rare Disease Day on Twitter (@rarediseaseday) Re-tweet us and use the hashtag #raredisease

youtube.com/rarediseaseday

Watch the videos, comment and link to the many videos and upload your video to the Rare Disease Day channel via rarediseaseday.org

flickr.com/photos/rarediseaseday

Upload your photo on to the Rare Disease Day Photo Wall and add a comment in your own language

Reporting back! No newsfeed this year

Expand the use of STORIFY: Storytelling tool to put together a digest of news

Curates social media (FB posts, tweets, photos, videos, add text/events from country pages…)

Important that you keep us updated on key developments in your campaign, send to rarediseaseday@eurordis.org

After Feb 28: send us press clippings, photos, short higlights of the campaign

http://storify.com/rarediseaseday/rare-disease-day-2012

EURORDIS event in Brussels Advocacy event

Public Hearing at the European Parliament

Hosted by MEP Antonyia Parvanova

Leading voice at EP on healthcare issues

Cross Border Health Care Shadow Rapporteur

Rapporteur of the EU Transparency Directive

To accelerate process to get orphan drugs on the market

Speed up decion-making on pricing & reimbursement - Make it more transparent

26 February – day before the Directive is voted

Working Group & 2014… Mirjam Mann, ACHSE, Germany

Claudia Delgado, FEDER, Spain

Simona Bellagambi, UNIAMO, Italy

Mary Dunkle, NORD, USA

Avril Daly, GRDO, Ireland

Open to anyone interested in being more active in the strategy of the campaign at international level!

2013 Rare Disease Year in Spain

Towards a European Rare Disease Day

RDD to be recognised as an official day by WHO

Ideas? Comments? Suggestions?