Today is Rare Disease Day 2017! Today, with events taking place in over 90 countries all around the world, we hope to raise more awareness than ever for rare diseases!
With the theme of research, and the slogan, ‘With research, the possibilities are limitless’, #RareDiseaseDay 2017 is an opportunity to call on all researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
This year’s Rare Disease Day video, which has been viewed over a hundred thousand times and translated into over 30 languages, draws a parallel with a routine that many of us go through multiple times a day – searching for an answer on the internet. The video highlights how isolating it is when you search on the internet but receive the response ‘your search had no results’. It also highlights the hope and promise that comes with additional research into rare diseases, something that must be continuously strived for.
You are still able to participate in raising awareness of the day and be part of the change, by sharing the video, the poster, or any Rare Disease Day material on your Facebook, Twitter or other social media platforms.
This year, on the tenth edition of the day, events will be held for the first time in four African nations, Botswana, Nigeria, Senegal and Sudan. Events will also be held for the first time in Saint Pierre and Miquelon.
What is a Rare Disease?
A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
One rare disease may affect only a handful of patients in the EU (European Union), and another may touch as many as 245,000. In the EU, as many as 30 million people may be affected by one of over 6000 existing rare diseases.
- 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
- 50% of rare diseases affect children.
7 Ways to Participate in 2017
Are you part of an organisation that has in interest in rare diseases? Become a friend of Rare Disease Day to show your support and to join the RDD 2017 campaign!
If you are an individual or patient organisation, please register your event by submitting the event form.
Raise and Join your Hands to show your solidarity with rare disease patients around the world!
Tell your rare disease story by uploading a photo and/or video to the RDD website.
Download the logo, Information Pack, and other communication materials!
Facebook, Twitter, YouTube, Flickr… Participate in the Rare Disease Day campaign via Social Media!
Public marches, informative lectures, meeting with local and national authorities… Since Rare Disease Day started in 2008 thousands of varied and exciting events have been organised to raise awareness for Rare Diseases.