It includes a lot of the elements that CORD has been promoting for the past 12 years. Read the background document here. Patient groups can sign up for the consultation sessions or take part during the CORD Innovative Therapies Conference on 8-9 November 2018.
Read CORD Stakeholder Consultation: Supplemental Process Here.
Is this the announcement Canadians with rare diseases have been waiting for? On October 17th, the Provincial/Territorial Expensive Drugs for Rare Diseases Working Group announced consultations on a proposed Supplemental Process for Complex/Specialized Drugs, including those for Rare Diseases. The Canadian Organization for Rare Disorders has been advocating for over 12 years for a Drugs for Rare Diseases Program, appropriate to the unmet needs of small patient populations, while recognizing the cost of therapies and the challenges in inherent in determining their safety and effectiveness.
The EDRD Working Group is asking for feedback from all stakeholders on the proposed Supplemental Process and has suggested that CORD coordinate the feedback from member organizations. Please take a few minutes (13 to be exact) to complete this survey so we can be sure that they hear from the Rare Disease Patient Community.
The key elements of the EDRD Supplemental Process are summarized in the survey.
Please complete the survey at your earliest opportunity but no later than December 10, 2018.
Link: https://www.surveymonkey.com/r/CORD_EDRD_Survey
If you have any questions, please feel free to contact me directly.
Durhane Wong-Rieger
President & CEO
Canadian Organization for Rare Disorders
151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4
p: 416-969-7435
m: 647-801-5176
www.raredisorders.ca
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.
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