The Spirit and History of Rare Disease Day Anja Helm, Senior - - PowerPoint PPT Presentation

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May 21, 2023 117 likes •345 views

The Spirit and History of Rare Disease Day Anja Helm, Senior Manager of Relations with Patient Organisations, EURORDIS 30/09/2014 eurordis.org eurordis.org 2 The Spirit of Rare Disease Day EURORDIS / Council of National Alliances in 2008

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eurordis.org eurordis.org

Anja Helm, Senior Manager of Relations with Patient Organisations, EURORDIS

The Spirit and History of Rare Disease Day

30/09/2014

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eurordis.org

The Spirit of Rare Disease Day

30/09/2014

EURORDIS / Council of National Alliances in 2008
Patient-driven awareness campaign
In 2010, anyone can participate: politicians, public

authorities, policy-makers, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases

The spirit of Rare Disease Day means that the logo

and materials are not to be used for commercial purposes

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eurordis.org

Patient-driven - Countries and regions

84 in 2014

72 in 2013 63 in 2012

55 in 2011 46 in 2010

30 in 2009 18 in 2008…

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Communications tools

Logo, Infopack, Poster in 2008 Added Facebook, Flickr, Twitter, YouTube in 2009 Friends of Rare Disease Day in 2010 New turquoise visual in 2011

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Communications tools

Official video in 2012 Official video and poster in 2013 New website, Ambassador in 2014 Webinars in 2015

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eurordis.org 30/09/2014

Rare Disease Day’s Success is YOU!

Questions?

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Avril Daly Vice President, EURORDIS Chair, Genetics & Rare Disorders Organisation Chief Executive, Fighting Blindness

Rare Disease Day in Ireland Successes and Difficulties

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Discussion Points

1. How did we get started? 2. Communication materials 3. Events that worked 4. Media attention 5. Fundraising

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How did we get started?

Building awareness
Using international campaign

materials

logo, slogan, poster
Part of an international movement…

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Successes and difficulties

Step 1 —

ADVOCATE

Step 2 —

POLICY ACTIONS

Step 3 —

EUROPEAN YEAR FOR RARE DISEASES

Events that worked
Getting media interested
Getting politicians involved

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Fundraising

Creating momentum and awareness
Dangers?

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Thank You

QUESTIONS?

Avril Daly, Ireland Chair, Genetics & Rare Disorders Organisation

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A tutorial on intellectual property, value and potential misuse.

EURORDIS Webinar - The Spirit of Rare Disease Day, 30 September 2014, Presentation by Thomas Kanga-Tona, Client Executive, Healthcare, Burson-Marsteller

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Best practice of logo use for participating associations

A. A consistent logo…
…Improves your initiative’s

identity

…Improves the initiative’s

coherence

…Improves the initiative’s

visibility

…Makes the initiative

memorable

…Has a wider reach

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B. Simple safeguards exist…
…Always refer to the materials on the

Rare Disease Day website

…Improve the accessibility of the

Rare Disease Day website’s download section

…Improve the accessibility of the

Rare Disease Day website’s disclaimer

…Ask EURORDIS if you have doubts

Best practice of logo use for participating associations (2)

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Preventing the misuse of the RDD logo by third parties

A. Letting third parties misuse the

RDD logo…

…Harms the initiative’s identity
…Harms the initiative’s credibility
…Harms your organisation’s

reputation

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B. You could address misuse by…
…Agreeing with external partners on

the use of the logo

…Improving the accessibility of the

disclaimer on good use of the RDD logo

…Referring to EURORDIS when a

misuse occurs

Preventing the misuse of the RDD logo by third parties (2)

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Question time

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Thank you!!

Contact details: Thomas Kanga-Tona, Client Executive, Healthcare, Burson-Marsteller Brussels thomas.kanga-tona@bm.com