February 28, 2017 marks the tenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the theme of research. – RareDiseaseDay.org
What is Rare Disease Day?
Rare Disease Day always happens on the last day of February. Although the mission is to raise awareness of rare disease and the battles that patients and families face, there is also a theme. This year’s theme is research. It goes without saying that research is needed to find cures and to develop treatments that will help patients in the meantime.
How do you get involved?
Go to RareDiseaseDay.org to find banners, profile pics for social media, events and ideas.
There are programs and events planned all over the world. These are just a few:
- The Canadian Organization for Rare Disorders (CORD) is holding their Rare Disease Day 2017 Conference & Dinner Awards Gala in Vancouver, March 30-31. There is also a Wake Up to Rare Disease Day in Ontario event planned for February 28.
- Sanofi Genzyme has launched a Pledge4Rare campaign. The goal is to participate in running or walking 7,000 miles. A donation will be made to the NIH Undiagnosed Diseases Network.
- Amicus Therapeutics is running initiatives throughout February to promote research and raise awareness.
- Check out the links below and join the conversation…
Rare Disease Day on Facebook
Rare Disease Day on Twitter
Rare Disease Day on YouTube
At last count, there were over 7,000 rare diseases. 1 in 12 people has a rare disease and 2/3 of those are children. 30% of those children won’t reach their 5th birthday. We have the power to change this but we have to raise awareness and work together.
President, Canadian Association of Pompe