Rare Disease Day: Discussion of a good practice example: Mavris
•
0 likes•2,615 views
"Rare Disease Day: Discussion of a good practice example", presented by Maria Mavris at EUPATI 2014 Workshop on 2 April 2014 in Warsaw
Recommended
Recommended
More Related Content
What's hot
What's hot (19)
Similar to Rare Disease Day: Discussion of a good practice example: Mavris
Similar to Rare Disease Day: Discussion of a good practice example: Mavris (20)
More from Nowgen
More from Nowgen (15)
Recently uploaded
Recently uploaded (20)
Rare Disease Day: Discussion of a good practice example: Mavris
- 1. Maria Mavris European Rare Diseases Organisation (EURORDIS), France EUPATI 2014 Workshop, 2 April 2014, Warsaw Break-Out Group Presentation and discussion of Good Practice Example: EURORDIS The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.
- 2. eurordis.orgeurordis.org Maria Mavris Therapeutic Development Director maria.mavris@eurordis.org Rare Disease Day 203/04/2014
- 3. eurordis.org EURORDIS 3 An international non-profit, non-governmental umbrella rare disease patients’ organisation representing an estimated 30 million individuals in Europe Our Mission: • To build a strong pan-European community of patient organisations and people living with rare diseases • To be their voice at the European level • To directly or indirectly fight against the impact of rare diseases on their lives
- 4. eurordis.org EURORDIS in brief 4 • Founded in 1997 • +600 member patient organisations • 56 countries (26 EU countries) • 33 National Alliances of RD Patients Organisations • 40 European Federations • Outreach to over 1800 patient groups • Over 4,000 rare diseases represented • 27 staff members, offices in Paris, Brussels, Barcelona • Approximately 130 volunteers
- 6. eurordis.org Where did it begin? • A day to put Rare Diseases in the spotlight – build awareness • Conceived in 2006 at a EURORDIS meeting with the Council of National Alliances • Executed by the Council of National Alliances and coordinated by EURORDIS internationally • Last day of February every year since 2008 03/04/2014 6
- 7. eurordis.org Rare Disease Day • National Alliances are the official partners • Thousands of events are held around the world in over 80 countries • The momentum contributes to the advancement of national plans and strategies for rare diseases in a number of countries in the EU and beyond. 03/04/2014 7
- 8. eurordis.org Targets • General Public (and the Media) • Patients and patient representatives • EU and national policy makers & Health authorities • Health professionals and care givers • Researchers, clinicians and academics • Pharmaceutical and biotech industry
- 9. eurordis.org Organisation- role of EURORDIS • Dates, themes, content • International coordination of Rare Disease Day • Management of graphic identity (logo, poster, visuals) • Rare Disease Day website • Development of common tools • European level event • Management of “Friends of Rare Disease Day” list • Evaluation of results at international level • Media monitoring 03/04/2014 9
- 10. eurordis.org • Coordination at national level • Updating information on www.rarediseaseday.org • Linking national/local partners to „Friends of Rare Disease Day‟ • Adaptation of common tools • Funding for local actions • Press/ Media contacts • Data gathering for evaluation • Organisation of common features: • Patron: video or written support message • Reaching out to researchers 10 Role of National Alliances
- 11. eurordis.org Additional stakeholders are invited to participate in the event: European Federations, EUROPLAN partners, Industry, Research Networks, Regulators Participating organisations must: - Contact their national alliance in their country - Coordinate their activities with the national alliance in their country - No written agreement but by completing on-line form to become a „Friends of Rare Disease Day‟ they accept to: - adhere to the spirit of the campaign (no commercial use of the logo! No product advertising!) - link to website(s) and post logo - help raise awareness and relay the messages of the campaign (Names of „Friends‟ will be displayed on website) 11 Other organisations
- 12. eurordis.org Communication tools • Info Pack • Logo / banner / email footer • Social media banners and logos • Poster • Slogan • Website • Press kit • Official video 12
- 16. eurordis.org Rare Disease Day: Participating Countries 18 in 2008 30 in 2009 46 in 2010 55 in 2011…. >80 in 2014 FSGA, January 21, 2012, Sydney, Australia
- 17. eurordis.org Website - Country page 03/04/2014 17
- 18. eurordis.org Sharing stories and photos…. 03/04/2014 18
- 19. eurordis.org Rare Disease Day (2012) - video 03/04/2014 19 https://www.youtube.com/watch?v=LBVug-GVLg0