Happy Rare Disease Day everyone! Today raises awareness, tolerance and understanding. It’s amazing how many people are affected by the array of rare diseases out there. Collectively, we’re not so rare after all.
How will you celebrate Rare Disease Day?!
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 2014 Conference & Dinner Awards Gala in Ottawa.
- Genzyme again recognizes International Rare Disease Day with Global Awareness Programs and their Fourth Annual Patient Advocacy Leadership (PAL) Awards.
- Amicus Therapeutics recognizes International Rare Disease Day by ringing the bell to close NASDAQ . John Crowley will be accompanied by representatives of a number of patient groups.
- Check out the links below and join the conversation…
Rare Disease Day on Facebook
Rare Disease Day on Twitter
Rare Disease Day on YouTube
Sometimes it’s important to step back and take stock. I would like to thank all the researchers (and their families whom they probably neglected), industry, doctors, nurses, patients & their families, and all the good people that I’ve met in the eight years since I was diagnosed. Like it or not, we’re all in this mess together!
President, Canadian Association of Pompe