The countdown has started! The 2016 website www.rarediseaseday.org is up and running which means that now is the time to start planning and posting your Rare Disease Day events.Â
Families, patient organisations and medical professionals are strongly encouraged to add information about the events they are planning or get involved in events that are already organised. Take a look at the events already posted for inspiration, or come up with something completely new; any ideas are welcome if they can help to activate communities and build excitement around 29 February 2016, the ninth edition of Rare Disease Day.
New Website
This year, there is a new design to the website which means that it is even easier to navigate and find exactly what you need to help you plan for the day. Amongst many other things you can find:
- InfoPack, offering tips and suggestions on how to get involved
- Information on the theme and slogan
- Communication tools, including Rare Disease Day logo and poster
For details about how to best use the communication tools to publicise your Rare Disease Day event, watch our Social Media Webinar, hosted by Robert Pletcha, here on the rarediseaseday.org website.
Ways to get involved
As well as organising an event and posting it on the website, there are other ways that you can celebrate Rare Disease Day 2016:
- Raise and Join Hands: Whether you are 5 or 5000 people, raise and join hands to show solidarity with rare disease patients around the world. Upload your photo on the Rare Disease Day website. This can be done before the Day or as part of the activities you have already planned on the Day.
- Tell Your Story– Participants in Rare Disease Day from around the world are invited to share their personal stories about living with a rare disease. Send us your story, video or photo.
Patient Voice: Join us in making the voice of rare diseases heard
The theme and slogan for Rare Disease Day 2016 are: Patient Voice: Join us in making the voice of rare diseases heard. This recognises the crucial role that patients play in voicing their needs and instigating positive change in their lives. It also appeals to a wider audience by encouraging those not directly affected by a rare disease to join the community and to help bring patients and their families out of the isolation that they often feel.
Created and coordinated by EURORDIS and organised with rare disease National Alliances around the world, the Rare Disease Day campaign raises awareness amongst the general public, policy makers, public authorities, industry representatives, researchers, and health professionals.
If you have any questions or want more information, write to us at [email protected]
This Rare Disease Day, Join us in raising the voice of rare diseases. Together, we can amplify the Patient Voice so it is heard all over the world.