3rd Annual London Ride to Cure FOP
News & Updates
When: Monday, March 3, 2014
Where: The Westin Ottawa
On March 3rd, 2014, the 14+ members of the Expert Working Group, after weeks of research, drafting, and debate, will unveil the Framework for the first-ever Canadian Strategy for Rare Diseases.
ATTN: Adult patients and parents of children with rare diseases for focus groups to be held in Calgary, Edmonton and Ottawa between February-April. The Center of Genomics and Policy (U. McGill, Montreal) is recruiting patients for a study “Preferences and the Value of Whole-Exome Sequencing as a Diagnostic Tool for Rare Diseases.” It is part of the CARE for RARE project, a pan-Canadian project promoting the use of a new genetic technology for diagnosing rare diseases.
The aim of the study is to explore and understand the perceptions and opinions of patients with rare diseases regarding the value of obtaining a diagnosis. Furthermore, they wish to understand the value of using technologies such as whole-exome sequencing (WES) in providing a clinical diagnosis for patients with rare diseases.
Contact: email@example.com or 1-855-398-6724 (An honorarium will be provided.)
4th Annual Calgary Ride to Cure FOP - 2014 Date TBA
Watch for the Calgary Ride 2014 date announcement! Pete and Karen hosted their annual “Ride and Walk to Cure FOP” last year on Sunday, July 28, 2013 at Calgary’s Baker Park! In an effort to do something a little different this year they did a parents vs. kids fundraiser. Pete and Karen had their own Giving Page and Owen and Miranda had theirs. I think that it was apparent pretty quickly that Owen and Miranda would win the fundraising challenge. Big thanks to everyone who donated and participated and helped us raise an amazing 6,000.00! If you want to get in touch with someone about this event, you can contact Karen directly at firstname.lastname@example.org