Lisa MacLeod, MPP (Nepean-Carleton) is bringing forward a Private Members’ Motion on October 20th, to address the funding gap for patients in exceptional circumstances through the consideration of a compassionate catastrophic care fund.
The motion reads:
“That, in the opinion of this House, the Ministry of Health and Long Term Care (MOLTC) appoints an advisory committee to review jurisdictions where a process is in place to consider lifesaving experimental and high cost healthcare treatments and otherwise exceptional circumstances for patients. The MOHLTC advisory committee should consider Australia’s Special Access Scheme; New Zealand’s Exceptional Circumstances Framework and High Cost Treatment Pool and the UK’s National Health Service’s Experimental and Unproven Treatments Policy with the view to establish a compassionate catastrophic care program in Ontario for those suffering from rare disease or whose treatments may be experimental or complimentary but are not yet covered by Ontario Health Insurance Program (OHIP)”
What you can do to help:
Durhane Wong-Rieger
President
Canadian Organization for Rare Disorders
151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4
T: (416) 969-7435
M: (647) 801-5176
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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