On March 10th, yellow scarves will take over the House of Commons in support of rare disease patients and families! Members of Parliament from all parties have agreed to wear the bright scarves bearing the logo of Rare Alliance Canada, a multi-stakeholder alliance aimed at improving the lives of patients with rare diseases who face tremendous challenges in terms of getting the right diagnosis, care and treatment (see: http://www.rarealliancecanada.org).
Following Question Period – at 3:15pm – parliamentarians will be joining patients, caregivers and representatives from the Canadian Organization for Rare Disorders (CORD) for a unique and RARE photo opportunity in front of the Parliament Building.
Rare disease patients’ visit to Parliament Hill coincides with International Rare Disease Day that took place on February 29, 2016. The rare disease community is asking the new parliament and government to join them in implementing Canada’s Rare Disease Strategy!
WHAT: RARE photo opportunity with MPs, Senators and rare disease patients wearing bright yellow scarves!
WHEN: THURSDAY, MARCH 10, 20 3:15 pm
WHERE: In front of Centre Block (outside steps)
WHO: Members of Parliaments and Senators
Dr. Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders (CORD)
CORD Youth Leadership Award recipient and local hero Jonathan Pitre (and mother Tina Boileau), Ottawa rare disease patient (known as “Butterfly Child” with Epidermolysis bullosa)
50 other members of the rare disease community
-30-
CONTACT: Durhane Wong-Rieger
Canadian Organization for Rare Disorders
(647) 801-5176
durhane@sympatico.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.
LEARN MORE