Rare Disease Day 2012

Rare Disease Day is particularly special this year. 2012 is a leap year so the day will fall on a very “rare” day: February 29. On and around this date, the rare disease global community is invited to join forces to put the spotlight on rare diseases and the millions of people affected by them.

The theme: Solidarity!

In its fifth year, Rare Disease Day will seek to draw attention specifically to the importance of SOLIDARITY in the field of rare diseases. Solidarity has been selected as the theme of the 2012 campaign to focus on the need for collaboration and mutual support amongst diseases, stakeholders and across countries.

The slogan is a reminder that acting together makes particular sense in the field of rare disease because patients are rare and expertise is scarce. Rare diseases are few and far between, but collectively they are many and people living with them all face similar challenges - so they will be stronger if they join forces.

The website: check it regularly!

The Rare Disease Day 2012 website has been launched. It features a new design, in line with this year’s theme and visual identity. The face of this year’s campaign are three siblings from Lithuania living with a rare genetic condition known as MPS VI.

The website provides general information about the campaign and the theme, gives ideas of how to get involved, provides common tools for download and allows patients to share their story by uploading photos and videos. It will also include a calendar of national and local events that will be expanded as more countries sign up closer to the day. (To see the list of participating National Alliances click here)

The materials: ready and easy to use!

The logo, poster, banner and an information pack are now available in the ‘Downloads’ section of the website. The communication materials are easily adaptable and should be disseminated as widely as possible. You can add your own logos and translate the slogan as needed.

Friends of Rare Disease Day: your hub to join!

The website will display the people and organisations who have signed up as a “Friend of Rare Disease Day”. This display will be updated on a daily basis in the weeks preceding the day, to show the growing list of individuals and sympathisers from industry, public authorities, research and others.

Patient stories: real life!

The website offers the possibility to everyone to upload a video or a photo and post a short testimony in their own language. The Rare Disease Day Photo Wall and the collection of Rare Disease Videos that are shown on the website help create awareness and build the community.

Social media: join the vibrant networks!

The Rare Disease Day Twitter page, Flickr gallery, YouTube channel and Facebook group - with more than 18,000 followers to date - are all excellent channels to share information, make contacts, expand the rare disease community and create a buzz around Rare Disease Day!

We encourage you to use Rare Disease Day social media and to invite your members, friends and contacts to do the same. The more people join, the more effective we will be at spreading the messages of Rare Disease Day and raising awareness of rare diseases.

Video campaign: Pass it on!

EURORDIS is preparing a short promotional video for Rare Disease Day 2012. The video gives general information about rare diseases and seeks to create awareness. Not intended to promote one disease or organisation in particular, but rather to promote Rare Disease Day, the date, the theme and the website.

The idea is to disseminate it as widely as possible.

Reaching out to the media: you are the voice!

The Rare Disease Day website will make a selection of documents, videos and publications available that can be used to inform and engage the media. A changing selection of press articles will be displayed on the website’s homepage to monitor media attention.

Staying in touch

Questions? Comments? Send us an email at rarediseaseday@eurordis.org

If you want updates on these features and the general campaign, sign up to the Rare Disease Day mailing list. Visit us now on www.rarediseaseday.org!

This article was first published in the December 2011 issue of the EURORDIS newsletter

Author: Paloma Tejada
Photo credits: © EURORDIS