Raredisorders.ca

About CORD Canadian Organization for Rare Disorders

WEBCORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for health policy and a …

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URL: https://www.raredisorders.ca/about-cord/

Time to Jump Start Rare Disease Drug Strategy

WEBCORD RARE DRUG STRATEGY ACTION STEPS: JUMP START ACTION TO DO NOW: 1. Patient empowerment: Empower patient organizations and patient …

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Canada4Rare initiative aims to ‘Save Rare Lives!’

WEBMarch 23, 2022 (Toronto, Ontario) – The Canadian Organization for Rare Disorders (CORD) is calling on all Canadians to go to Canada4Rare to send to government a …

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Canadian Organization for Rare Disorders

WEBThe Bayshore Foundation for Empowered Living, the charitable arm of Bayshore HealthCare, has donated $5,000 to the Canadian Organization for Rare Disorders …

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National Strategy for Drugs for Rare Diseases

WEB2 Introduction To help people across Canada living with a rare disease access the drugs they need, Budget 2019 proposed to invest up to $1 billion over two years, starting in …

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Canadian Lives Depend on New Medicines. Join the “Fight …

WEBPost the image to your personal Twitter, Facebook, Instagram and other accounts with either of the following text (English or French): I’m joining #fightforourlives to ensure we …

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Health Canada Approves IMBRUVICA® (ibrutinib) for the …

WEBIMBRUVICA® is an oral, once-daily, single-agent therapy associated with a durable response in patients with this rare B-cell lymphoma. Toronto, ON – May 12, 2016 – …

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Canadians with rare diseases do not get timely diagnosis …

WEBRARE DISEASE DAY 2024 CANADIAN ILLUMINATIONS On February 29, 2024 these monuments will be lit up in honor of Rare Disease Day. #LightUpForRare …

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Canada’s Rare Disease Strategy

WEBCanada’s Rare Disease Strategy proposes a five-point action plan that will address unnecessary delays in testing, wrong diagnoses and missed opportunities to treat. 1. …

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Submission by the CANADIAN ORGANIZATION FOR RARE …

WEBCORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders. CORD works with governments, …

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FAQs: Everything you want to know about Canada's Rare …

WEBThese include misdiagnosis, unnecessary surgeries, social isolation, financial hardship, lack of treatment options and early death. These are the same challenges faced by …

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Ontario Rare Diseases Working Group Releases Final Report

WEBCanadian Organization for Rare Disorders. 151 Bloor Street West, Suite 600. Toronto, Ontario M5S 1S4 Canada. Tel: (416) 969-7464 / 1-877-302-7273. Fax: (416) 969-7420. …

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CONSENSUS FRAMEWORK FOR ETHICAL COLLABORATION

WEBCanadian Organization for Rare Disorders 151 Bloor Street West, Suite 600 Toronto, Ontario M5S 1S4 Canada Tel: (416) 969-7464 / 1-877-302-7273 Fax: (416) 969-7420 …

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Template letter to Canada’s Federal Health Minister

WEBFellow members of the rare diseases community: Attached is a letter that I just sent to the federal Health Minister, whom I hope to have the chance to meet when I am in Ottawa, …

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Canada’s long journey toward an Orphan Drug framework

WEB21 ADVOCATE21 Feature ADVOCATE, Volume 20/Issue 2 Summer 2013 Continued from page 20 special interest groups in Canada to develop an Orphan Drug policy.” …

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CORD Membership Canadian Organization for Rare Disorders

WEBCORD is a national organization comprised of patient groups representing individuals and families affected by rare disorders. CORD provides programs, resources, and a common …

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Corporate Leaders Forum Canadian Organization for Rare Disorders

WEBCanadian Organization for Rare Disorders 151 Bloor Street West, Suite 600 Toronto, Ontario M5S 1S4 Canada. Tel: (416) 969-7464 / 1-877-302-7273 Fax: (416) 969-7420

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REAL-WORLD DATA (RWD) / REAL-WORLD EVIDENCE (RWE) …

WEB12-Steps to a National Rare Disease Framework •Patient empowerment:Empower patient organizations and patient advocates as active full partners •Creation of a Canadian Rare …

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