There are only 100 days left until 28 February 2014 - Rare Disease Day!

Rare Disease Day 2014 logorarediseaseday.org is the reference website for Rare Disease Day – containing everything you need to plan an event … or to find one in your area! The Rare Disease Day 2014 website has been launched and includes lots of exciting new features. Organisations wishing to list an event can contact rarediseaseday@eurordis.org to upload their information. Post your event now and help build momentum for Rare Disease Day!

On the new website, the latest Rare Disease Day events are now listed directly on the homepage. The new design allows photos, videos, flyers, and logos to be added directly to your information page. To learn more about posting your event, a live webinar is being held on Monday 25 November at 16:30 Central European Time. We hope you can join us.

100 days to goThis year, Rare Disease Day focuses on Care and invites participants to Join Together for Better Care. Rare disease care means different things to different people and can include special equipment, physical therapy, social services, medicines, respite for family members, diagnostics, research - and more. Plan a Rare Disease Day event in your community that raises awareness for the kinds of care people living with a rare disease need. In coming weeks, you can find downloads for the Rare Disease Day banner, logo, poster, and the special 2014 video focusing on Care.

Last year, the Rare Disease Day website received over 70,000 visits, so this is your chance to raise awareness for rare diseases where you live. The popular Tell your Story, Join and Raise Hands and Become a Friend of Rare Disease Day campaigns are back this year … we hope you will participate!

2014 marks the seventh Rare Disease Day. Let’s make it the best ever! Let’s Join Together for Better Care on 28 February 2014.


Louise Taylor, Communications and Development Writer, EURORDIS

Page created: 20/11/2013
Page last updated: 20/11/2013
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases