August 19, 2016 — Maureen Smith, Secretary of the Canadian Organization for Rare Disorders (CORD) has been appointed by the Patient-Centered Outcomes Research Institute (PCORI) as an ad-hoc member of its Advisory Panel on Rare Disease.
Maureen will join other members of the panel in applying her experience and expertise to helping PCORI refine and prioritize research funding priorities and ensure that the research PCORI supports centers on the outcomes that matter to patients and other healthcare decision makers. PCORI is an independent, non-profit organization authorized by US Congress to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.
She was selected on the basis of her experience, expertise, and ability to contribute to the panel’s tasks and responsibilities. Panel members represent a broad range of healthcare stakeholder groups and perspectives, including patients, family caregivers, clinicians, drug and device makers, and researchers, among others.
More information about the Advisory Panel on Rare Disease, including its scope of work and a list of all members, is available on the PCORI website: http://www.pcori.org/get-involved/advisory-panels/advisory-panel-on-rare-disease/.
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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