Ask not what Rare Disease Day can do for you…
What can YOU do to support International Rare Disease Day this year? Does your country have a petition to be signed? Is there a benefit to attend? A march to join? International Rare Disease Day is an annual awareness-raising event coordinated by the European Organisation for Rare Diseases (EURORDIS) at the international level and by the National Alliances of Patient Organisations at the national level. In 2010, a record 46 countries participated - making it a truly international campaign. Everyone concerned by rare diseases - researchers, health professionals, public authorities, members of industry and patients - is encouraged to join this year's campaign as Friends of Rare Disease Day. Friends can help raise awareness by posting the Rare Disease Day logo and linking to the Rare Disease Day website from their own websites. See who has signed up so far
The focus of this year’s event is Rare Diseases and Health Inequalities and the theme is Rare but Equal. At the European level, the symposium Rare but Equal - Addressing Health Inequalities for Rare Disease Patients in Europe, will take place in the International Press Centre in Brussels. Attendees will include patients and patient representatives, health professionals from rare disease centres of expertise, social researchers and academics, members of the EU Committee of Experts on Rare Diseases, industry representatives, and high-level officials of the European Medicines Agency and the European Commission’s DG Health and Consumers, DG Employment and Social Affairs, and DG Justice, Fundamental Rights and Citizenship. The programme will be devoted to presenting the rare disease landscape in Europe and to demonstrating prevalent inequalities through case studies and surveys. To learn more about this and other specific activities being planned in your country, or to register an activity you are hosting, visit the Participating Countries page of the Rare Disease Day website.
OrphaNews Europe encourages all readers to get involved – 28 February is the day to put rare diseases in the spotlight!