Resources to Assist in the Building of a Patient Group
Thinking about starting up a patient group? Check out CORD’s new collection of online resources!
Over the years, CORD has supported many of our individual members to start their own groups and, for most, it was a completely new experience. One of the challenges new organizations often encounter is finding resources that outline the basic steps to follow when getting started. With that in mind, CORD assembled a group of its members to find out what tools they had found useful – or wish they had found – to help build and manage their organizations. The feedback was really helpful and pointed to a few key themes. Building on this, CORD turned to Charity Village’s Knowledge Centre [https://charityvillage.com/cms/knowledge-centre] to identify a number of web-based training tools and guides to meet these needs.
The result is a curated collection [click here for pdf] of free tools from Canada’s largest non-profit online community – assembled with the rare disease community in mind, but useful to anyone looking to start an organization. CORD will endeavour to maintain the collection of resources to remain current and adapt its content to the evolving needs of its members.
Your input is welcome! Whether you have an established group or are just getting started, let us know if you found this tool helpful and how we can improve it to best meet the needs of Canada’s rare disorder community. info@raredisorders.ca
Click here for CORD’s new collection of resources to help start and build a patient group!
Event
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.
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