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January 2014

Rare Disease Day: It just keeps getting better!


Map of Rare Disease Day eventsRare Disease Day 2014 is shaping up to be the biggest awareness-raising campaign for rare diseases yet! With only one month to go, participants in close to 80 countries and regions are expected to get involved – organising conferences, festivals, dinners, walks, media campaigns, concerts, and much more! We extend a special welcome to first-time participants from Ecuador, Egypt, Kenya and Oman. Visit the official Rare Disease Day 2014 website to find an event taking place near you.

Are you planning an event? Please let us know (rarediseaseday@eurordis.org) if you are planning an activity for Rare Disease Day 2014 so that it can be announced on our website.

Interested in learning how to plan an event? Our InfoPack has lots of information on how to plan an activity. And the RDD 2014 Get Involved website section explains many other ways you can demonstrate support for the day, including liking our Facebook page, adding us to your Google+ page, displaying the Rare Disease Day 2014 poster on your website or social media, participating in the Tell Your Story campaign by sending us your photographs or videos, sharing the compelling video message from Rare Disease Day 2014 Ambassador Sean Hepburn Ferrer, or taking part in the annual Raise and Join Hands campaign.

Rare Disease Day 2014 puts the spotlight on Care by emphasising the different kinds of care people with rare diseases and their families need and deserve. EURORDIS is organising a Policy Event in Brussels that explores Improving Access to Rare Disease Care: The Vision of Patients.

This year’s slogan “Join Together for Better Care” encourages the rare disease community to continue finding ways to work together to provide the different kinds of care that people living with a rare disease need. This Rare Disease Day, demonstrate that you care by organising an awareness-raising activity, or joining one taking place near you! 


Louise Taylor, Communications and Development Writer, EURORDIS

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