School of Public Health and Health Systems University of Waterloo is looking for adult (18+) volunteers to take part in a qualitative study that will explore how adults living with 22q11DS experience and adapt to the lifestyle changes from the COVID-19 Pandemic. Click here for more information.
We would like to provide you with the opportunity to take part in an international database that is collecting experience with COVID-19. CORD is collaborating with LunaDNA, a public benefit corporation, and Genetic Alliance, a USA-based not-for-profit Organization, to develop the CORD COVID-19 data platform to allow patients to store and share their individual experiences related to COVID-19, health/disease management, and health-related behaviour. The goal is to create a large repository of information that can inform us on an on-going bases of the experiences of patients, directly related to COVID-19 and beyond. Please be aware that the database conforms to the privacy principles of PIPEDA.
Join the database: https://peer.lunadna.com/cord-covid-survey/
RARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS
On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare Amherst Town Hall in Amherst Nova ScotiaBrampton Clock TowerBritish Columbia LegislatureBritish Columbia PlaceCalgary TowerEdmonton High Level BridgeEdmonton TowerFred A. Lundy bridge in Newmarket, ONMississauga City HallNanaimo BastionNiagara Falls (10:00pm – 10:15pm.) [Live cam link: https://www.earthcam.com/canada/niagarafalls/?cam=niagarafalls_str]Niagara sign in Thorold/Niagara regionOakville Town HallOlympic Cauldron Vancouver Convention CentrePeterborough City HallSales Of Light VancouverScience World Vancouver (FEB 28th)Signal Hill in St. John’s, NLThe Hamilton SignToronto CN TowerToronto Sign in Nathan Phillips SquareVaughan City HallVancouver Convention CentreThe Peace Bridge between Canada and the US Winnipeg Sign Winnipeg Bridge Let us know if there are other Canadian illuminations to add. Tag us on social media @raredisorders (Twitter/X), @raredisorders_cord (Instagram) or email us at info@raredisorders.ca with your photos of the monuments and Rare Disease Day events.
Join us and become part of an active Canadian rare disorder community. The only national organization representing all rare disorder patient groups in Canada.
LEARN MORE