the spirit and history of rare disease day
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The Spirit and History of Rare Disease Day Anja Helm, Senior - PowerPoint PPT Presentation

May 21, 2023 •117 likes •338 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

  2. 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

  3. The Spirit of Rare Disease Day • 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 30/09/2014 3 eurordis.org

  4. 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… 4 eurordis.org

  5. 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 eurordis.org

  6. Communications tools Official video in 2012 Official video and poster in 2013 New website, Ambassador in 2014 Webinars in 2015 eurordis.org

  7. Rare Disease Day’s Success is YOU! Questions? 30/09/2014 7 eurordis.org

  8. Rare Disease Day in Ireland Successes and Difficulties Avril Daly Vice President, EURORDIS Chair, Genetics & Rare Disorders Organisation Chief Executive, Fighting Blindness

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

  10. How did we get started? • Building awareness • Using international campaign materials - logo, slogan, poster • Part of an international movement…

  11. Successes and difficulties • Events that worked • Getting media interested Step 3 — EUROPEAN Step 2 — YEAR FOR • Getting politicians involved POLICY Step 1 — RARE DISEASES ADVOCATE ACTIONS

  12. Fundraising • Creating momentum and awareness • Dangers?

  15. Thank You QUESTIONS? Avril Daly, Ireland Chair, Genetics & Rare Disorders Organisation

  16. 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

  17. 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 17

  18. Best practice of logo use for participating associations (2) 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 18

  19. 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 19

  20. Preventing the misuse of the RDD logo by third parties (2) 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 20

  21. Question time

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

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