Workplan 2012
Informing & Raising Awareness Organise Rare Disease Day 2012: on the theme of “Solidarity & Rare Diseases” focusing on “Rare but strong together” • Info Pack, Poster & Slogan, dedicated Website, patient testimonies, social media • Create a Rare Disease Day Video Clip in several languages (in kind support) • Expand to 60+ countries in Europe and at the international level
Organise a one day Rare Disease Day Symposium in Brussels on Wednesday 29 February on “Rare but Strong Together” aimed at consolidating rare diseases as a priority in the 3rd EU Public Health and in the “Horizon 2020” EU Research Programmes, both for 2014-2020, and at promoting EU budget for rare diseases based on the high community added value Plan Future Rare Disease Days:
• RDD2013: Info Pack, Poster & Slogan, Website, patient testimonies, social media • RDD2013: Create a Rare Disease Day Video Clip in several languages • RDD2013: Plan Rare Disease Day Symposium in Brussels • Take actions to declare a European Year for Rare Diseases (2016? 2018?) • Take actions to promote Rare Disease Day as an official WHO Day
Improve content quality and navigation of EURORDIS Website: • Centred on target audiences: patients organisations & advocates, patient and families, stakeholders • Improve navigation and friendly use of website with revised or new features • Maintain quality, updated information in six languages (EN, FR, DE, ES, IT, PT) in all sections, expand the section in Russian • Further develop content and facilitate access via three focal points on homepage: Core – EURORDIS.org including specialised services, Satellites – (eNews, Rare Disease Day, RareConnect), Social media – (Facebook, Twitter, Flickr, Rare Disease Blogs)
• Within core website consolidate issues of strategic importance e.g. EU policy, National plans, Centres of Expertise & European Reference Networks, Orphan Drugs, Access to Medicines & CAVOD & HTA, Specialised Social Services, Patients’ trainings, Living with a Rare Disease, Learning From Each Other, Membership, Volunteers • Stimulate the International Rare Disease Blog supported by EURORDIS-NORD • Maintain specifications for technical backend maintenance of EURORDIS.org and RareDiseaseDay.org
Publish four issues of the e-Newsletter until April 2012, and replace by eNews Create EURORDIS eNews, a weekly communication to our members and subscribers (patient groups, patient advocates, healthcare professionals or researchers leaders, policy makers, regulators, companies, partners, media) to increase our outreach, maximise the efficacy and effectiveness of our communication, streamline our work, reduce our costs. Create the lay out and customised tool. Produce a minimum of 30 eNews in 7 languages Organise Video & Photo Contest. Presentation at ECRD 2012 Brussels Continue the photo project of 30 families affected by 30 different rare diseases in the 28 Member States of the European Union and two other European countries, illustrating 30 million people affected by rare diseases, for exhibition in European Institutions, European events, national events, and on the web. Complete with text and video testimonies Identify key advancements benefiting People Living with Rare Diseases in the last 15 years
Information Services to Patients Improve access to and quality of information through Rare Disease Help Lines:
collection of data on enquiries and organise the annual caller profile analysis
• Disseminate Policy Fact Sheets and guideline on the
Organise local trainings on shared tools and searching quality information on the web
creation & development of national help lines and the European Network of Help Lines • Re-launch progressively the European Network of Rare Diseases Help Lines:
Governance & business meeting, develop membership base
Engage and train help lines on reporting adverse events of medicines used in all rare disease treatments (orphan or not and off label) Apply for the EU wide unique 116 number
Maintain shared tools eg. common software for the
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