Accessibility Statement Skip Navigation
  • Resources
  • Blog
  • Journalists
  • Webcasts
  • Data Privacy
  • Français
  • my CNW 
    • Login
    • Register
  • Client Login 
    • Online Member Centre
    • Next Gen Communications Cloud
    • Cision Communications Cloud®
  • Sign Up
  • Send a Release
Return to PR Newswire homepage
  • News
  • Products
  • Contact
When typing in this field, a list of search results will appear and be automatically updated as you type.

Searching for your content...

No results found. Please change your search terms and try again.
Advanced Search
  • News in Focus
      • Browse News Releases

      • All News Releases
      • All Public Company
      • News Releases Overview

      • Multimedia Gallery

      • All Multimedia
      • All Photos
      • All Videos
      • Multimedia Gallery Overview

      • Trending Topics

      • All Trending Topics
  • Business
      • Auto & Transportation

      • All Automotive & Transportation
      • Aerospace, Defense
      • Air Freight
      • Airlines & Aviation
      • Automotive
      • Maritime & Shipbuilding
      • Railroads and Intermodal Transportation
      • Supply Chain/Logistics
      • Transportation, Trucking & Railroad
      • Travel
      • Trucking and Road Transportation
      • Auto & Transportation Overview

      • View All Auto & Transportation

      • Business Technology

      • All Business Technology
      • Blockchain
      • Broadcast Tech
      • Computer & Electronics
      • Computer Hardware
      • Computer Software
      • Data Analytics
      • Electronic Commerce
      • Electronic Components
      • Electronic Design Automation
      • Financial Technology
      • High Tech Security
      • Internet Technology
      • Nanotechnology
      • Networks
      • Peripherals
      • Semiconductors
      • Business Technology Overview

      • View All Business Technology

      • Entertain­ment & Media

      • All Entertain­ment & Media
      • Advertising
      • Art
      • Books
      • Entertainment
      • Film and Motion Picture
      • Magazines
      • Music
      • Publishing & Information Services
      • Radio & Podcast
      • Television
      • Entertain­ment & Media Overview

      • View All Entertain­ment & Media

      • Financial Services & Investing

      • All Financial Services & Investing
      • Accounting News & Issues
      • Acquisitions, Mergers and Takeovers
      • Banking & Financial Services
      • Bankruptcy
      • Bond & Stock Ratings
      • Conference Call Announcements
      • Contracts
      • Cryptocurrency
      • Dividends
      • Earnings
      • Earnings Forecasts & Projections
      • Financing Agreements
      • Insurance
      • Investments Opinions
      • Joint Ventures
      • Mutual Funds
      • Private Placement
      • Real Estate
      • Restructuring & Recapitalization
      • Sales Reports
      • Shareholder Activism
      • Shareholder Meetings
      • Stock Offering
      • Stock Split
      • Venture Capital
      • Financial Services & Investing Overview

      • View All Financial Services & Investing

      • General Business

      • All General Business
      • Awards
      • Commercial Real Estate
      • Corporate Expansion
      • Earnings
      • Environmental, Social and Governance (ESG)
      • Human Resource & Workforce Management
      • Licensing
      • New Products & Services
      • Obituaries
      • Outsourcing Businesses
      • Personnel Announcements
      • Real Estate Transactions
      • Residential Real Estate
      • Small Business Services
      • Socially Responsible Investing
      • Surveys, Polls and Research
      • Trade Show News
      • General Business Overview

      • View All General Business

  • Science & Tech
      • Consumer Technology

      • All Consumer Technology
      • Artificial Intelligence
      • Blockchain
      • Cloud Computing/Internet of Things
      • Computer Electronics
      • Computer Hardware
      • Computer Software
      • Consumer Electronics
      • Cryptocurrency
      • Data Analytics
      • Electronic Commerce
      • Electronic Gaming
      • Financial Technology
      • Mobile Entertainment
      • Multimedia & Internet
      • Peripherals
      • Social Media
      • STEM (Science, Tech, Engineering, Math)
      • Supply Chain/Logistics
      • Wireless Communications
      • Consumer Technology Overview

      • View All Consumer Technology

      • Energy & Natural Resources

      • All Energy
      • Alternative Energies
      • Chemical
      • Electrical Utilities
      • Gas
      • General Manufacturing
      • Mining
      • Mining & Metals
      • Oil & Energy
      • Oil and Gas Discoveries
      • Utilities
      • Water Utilities
      • Energy & Natural Resources Overview

      • View All Energy & Natural Resources

      • Environ­ment

      • All Environ­ment
      • Conservation & Recycling
      • Environmental Issues
      • Environmental Policy
      • Environmental Products & Services
      • Green Technology
      • Natural Disasters
      • Environ­ment Overview

      • View All Environ­ment

      • Heavy Industry & Manufacturing

      • All Heavy Industry & Manufacturing
      • Aerospace & Defense
      • Agriculture
      • Chemical
      • Construction & Building
      • General Manufacturing
      • HVAC (Heating, Ventilation and Air-Conditioning)
      • Machinery
      • Machine Tools, Metalworking and Metallurgy
      • Mining
      • Mining & Metals
      • Paper, Forest Products & Containers
      • Precious Metals
      • Textiles
      • Tobacco
      • Heavy Industry & Manufacturing Overview

      • View All Heavy Industry & Manufacturing

      • Telecomm­unications

      • All Telecomm­unications
      • Carriers and Services
      • Mobile Entertainment
      • Networks
      • Peripherals
      • Telecommunications Equipment
      • Telecommunications Industry
      • VoIP (Voice over Internet Protocol)
      • Wireless Communications
      • Telecomm­unications Overview

      • View All Telecomm­unications

  • Lifestyle & Health
      • Consumer Products & Retail

      • All Consumer Products & Retail
      • Animals & Pets
      • Beers, Wines and Spirits
      • Beverages
      • Bridal Services
      • Cannabis
      • Cosmetics and Personal Care
      • Fashion
      • Food & Beverages
      • Furniture and Furnishings
      • Home Improvement
      • Household, Consumer & Cosmetics
      • Household Products
      • Jewelry
      • Non-Alcoholic Beverages
      • Office Products
      • Organic Food
      • Product Recalls
      • Restaurants
      • Retail
      • Supermarkets
      • Toys
      • Consumer Products & Retail Overview

      • View All Consumer Products & Retail

      • Entertain­ment & Media

      • All Entertain­ment & Media
      • Advertising
      • Art
      • Books
      • Entertainment
      • Film and Motion Picture
      • Magazines
      • Music
      • Publishing & Information Services
      • Radio & Podcast
      • Television
      • Entertain­ment & Media Overview

      • View All Entertain­ment & Media

      • Health

      • All Health
      • Biometrics
      • Biotechnology
      • Clinical Trials & Medical Discoveries
      • Dentistry
      • FDA Approval
      • Fitness/Wellness
      • Health Care & Hospitals
      • Health Insurance
      • Infection Control
      • International Medical Approval
      • Medical Equipment
      • Medical Pharmaceuticals
      • Mental Health
      • Pharmaceuticals
      • Supplementary Medicine
      • Health Overview

      • View All Health

      • Sports

      • All Sports
      • General Sports
      • Outdoors, Camping & Hiking
      • Sporting Events
      • Sports Equipment & Accessories
      • Sports Overview

      • View All Sports

      • Travel

      • All Travel
      • Amusement Parks and Tourist Attractions
      • Gambling & Casinos
      • Hotels and Resorts
      • Leisure & Tourism
      • Outdoors, Camping & Hiking
      • Passenger Aviation
      • Travel Industry
      • Travel Overview

      • View All Travel

  • Policy & Public Interest
      • Policy & Public Interest

      • All Policy & Public Interest
      • Advocacy Group Opinion
      • Animal Welfare
      • Canadian Federal Government
      • Canadian Municipal Government
      • Canadian Provincial Government
      • Corporate Social Responsibility
      • Domestic Policy
      • Economic News, Trends, Analysis
      • Education
      • Environmental
      • European Government
      • FDA Approval
      • Federal and State Legislation
      • Federal Executive Branch & Agency
      • Foreign Policy & International Affairs
      • Homeland Security
      • Labor & Union
      • Legal Issues
      • Natural Disasters
      • Not For Profit
      • Patent Law
      • Public Safety
      • Trade Policy
      • Policy & Public Interest Overview

      • View All Policy & Public Interest

  • People & Culture
      • People & Culture

      • All People & Culture
      • Aboriginal, First Nations & Native American
      • African American
      • Asian American
      • Children
      • Diversity, Equity & Inclusion
      • Hispanic
      • Lesbian, Gay & Bisexual
      • Men's Interest
      • People with Disabilities
      • Religion
      • Senior Citizens
      • Veterans
      • Women
      • People & Culture Overview

      • View All People & Culture

  • Advanced Search
  • Overview
  • Cision Communications Cloud®
  • Monitoring
  • Distribution
  • Multimedia
  • Guaranteed Paid Placement
  • AI Tools
  • IR
  • Become a Client
  • Request a Demo
  • Editorial Bureaus
  • Partnerships
  • General Enquiries
  • Media
  • Worldwide Offices
  • Hamburger menu
  • Cision Canada
  • Send a Release
  • FR
    • Phone

    • 877-269-7890 from 8 AM - 10 PM ET

    • ALL CONTACT INFO
    • Contact Cision

      877-269-7890
      from 8 AM - 10 PM ET

  • Send a Release
  • Sign Up
  • Resources
  • Blog
  • Journalists
  • Webcasts
  • GDPR
  • News in Focus
    • Browse All News
    • Multimedia Gallery
    • Trending Topics
  • Business
    • Auto & Transportation
    • Business Technology
    • Entertain­ment & Media
    • Financial Services & Investing
    • General Business
  • Science & Tech
    • Consumer Technology
    • Energy & Natural Resources
    • Environ­ment
    • Heavy Industry & Manufacturing
    • Telecomm­unications
  • Lifestyle & Health
    • Consumer Products & Retail
    • Entertain­ment & Media
    • Health
    • Sports
    • Travel
  • Policy & Public Interest
    • Policy & Public Interest
  • People & Culture
    • People & Culture
  • Send a Release
  • Sign Up
  • Resources
  • Blog
  • Journalists
  • Webcasts
  • GDPR
  • Overview
  • Cision Communications Cloud®
  • Monitoring
  • Distribution
  • Multimedia
  • Guaranteed Paid Placement
  • AI Tools
  • IR
  • Send a Release
  • Sign Up
  • Resources
  • Blog
  • Journalists
  • Webcasts
  • GDPR
  • Become a Client
  • Request a Demo
  • Editorial Bureaus
  • Partnerships
  • General Enquiries
  • Media
  • Worldwide Offices
  • Send a Release
  • Sign Up
  • Resources
  • Blog
  • Journalists
  • Webcasts
  • GDPR

Takeda Releases Report on the Importance of Defining Rare Disease in Canada Français

Takeda Canada Inc. (CNW Group/Takeda Canada Inc.)

News provided by

Takeda Canada Inc.

Oct 17, 2022, 08:01 ET

Share this article

Share toX

Share this article

Share toX

  • The majority of Canada's G20 peers have adopted a definition of a rare disease as one where fewer than 1 patient per 2,000 people are affected

TORONTO, Oct. 17, 2022 /CNW/ -Today, Takeda Canada Inc ("Takeda") released its Defining Rare Disease in Canada: Lessons from G20 Nations report. The report highlights the need to develop a single, pan-Canadian definition of a rare disease to help accelerate and support the launch of Canada's Rare Disease strategy.

As Canada takes meaningful steps toward developing a national strategy for rare diseases, it remains one of a few G20 nations lacking a public and consistent definition of rare disease.

"Takeda applauds the Government of Canada's commitments to developing a national rare disease strategy to support patients and families living with a rare diseases," says Rute Fernandes, General Manager, Canada. "Takeda is proud to distribute this report as a meaningful resource to support policy discussions and as a foundation to launch a Canadian Rare Disease Strategy. The need for a clear definition will enable focus on the necessary infrastructure required to improve time to diagnosis, time to access treatment and patient care."

To better understand the global rare disease definitional landscape, Takeda analyzed the different approaches taken by other G20 countries – and came to four important conclusions:

  1. Defining what is a rare disease, is a critical early step in formulating policies and funding frameworks for patients with a rare disease.
  2. The majority of Canada's G20 peers have adopted a reasonably simple, quantitative definition: fewer than 1 patient per 2,000 people. Other approaches involve qualitative definitions built around criteria like "medical need" and prescriptive definitions that call out designated diseases or disease groups.
  3. With quantitative-only definitions susceptible to becoming blunt, rigid, or static, some countries have adopted blended definitions that combine quantitative and qualitative elements.                                                     
  4. Canada has lessons to learn from every jurisdiction reviewed can benefit from studying the approach taken by the European Union (E.U.). By marrying a prevalence threshold with a set of adaptable guidelines, the E.U. relies on a global quantitative norm, but offers policymakers a set of measures designed to instill flexibility and nuance into complex and dynamic deliberations.

"It is very important that Canadian decision and policy makers are guided by consistency in the designation of rare disease, recognizing the challenges due to rarity of a condition which may also be severe, progressive, and life-threatened, and lacking understanding, limited research, and few or no effective treatments," says Durhane Wong-Rieger, President & CEO at Canadian Organization for Rare Disorders (CORD).

The Defining Rare Disease in Canada: Lessons from G20 Nations report is part of Takeda's longstanding commitment to support rare disease policy in Canada.  In 2021, Takeda released Strategies for Rare Diseases: International Landscape Report which assessed and summarized best practices on how different countries have developed their own tailored approaches to expediting and expanding access to new treatments for rare diseases.

To view the Rare Disease Definition Report, click here.

Rare Disease Impact in Canad
A "rare" disease is any disease that affects a very small number of individuals. It is often genetic, chronic throughout a patient's life and life-threatening.i  With rare diseases affecting a relatively small set of patients, innovative treatments are often unavailable.  It's estimated only 5% of rare diseases have an approved treatment.ii, iii This reality has a distressing effect on patients and their families: studies suggest that at least 50% of rare diseases affect children, 30% of whom die before their fifth birthday. iv, v, vi

The journey toward appropriately managing a rare disease is long and challenging. On average, it takes 6-8 years before a patient receives a correct diagnosis; in this time, a patient will see an average of eight physicians and receive two to three misdiagnoses.vii The treatment delays caused by these diagnostic challenges often result in avoidable disease progression, which only amplifies the effect of the diseases on the patient and their caregivers.viii

About Takeda Canada Inc.
Takeda Canada Inc. is the Canadian organization of Takeda Pharmaceutical Company Limited (TSE: 4502/NYSE: TAK), a global, values-based, R&D-driven biopharmaceutical leader headquartered in Japan, committed to discovering and delivering life-transforming treatments, guided by our commitment to patients, our people and the planet. Takeda focuses its R&D efforts on four therapeutic areas: Oncology, Rare Genetics and Hematology, Neuroscience, and Gastroenterology (GI). We also make targeted R&D investments in Plasma-Derived Therapies and Vaccines. We are focusing on developing highly innovative medicines that contribute to making a difference in people's lives by advancing the frontier of new treatment options and leveraging our enhanced collaborative R&D engine and capabilities to create a robust, modality-diverse pipeline. Our employees are committed to improving quality of life for patients and to working with our partners in health care in approximately 80 countries and regions. For more information, visit:  takeda.com/en-ca 


i Critical Care Services Ontario. RARE DISEASES WORKING GROUP REPORT. March 10, 2017. [Cited 2022 Apr 6]. Available from: RARE DISEASES WORKING GROUP REPORT (gov.on.ca)

ii National Organization for Rare Disorders. Rare Disease Day. Frequently Asked Questions. [Cited 2022 Apr 6] Available from: https://rarediseases.org/wp-content/uploads/2019/01/RDD-FAQ-2019.pdf

iii Clarke, S., Ellis, M. & Brownrigg, J. The impact of rarity in NICE's health technology appraisals. Orphanet J Rare Dis 16, 218 (2021). [Cited 2022 Apr 6]. Available from: https://doi.org/10.1186/s13023-021-01845-x

iv EDITORIAL. Spotlight on rare diseases. The Lancet Diabetes & Endocrinology.VOLUME 7, ISSUE 2, P75, FEBRUARY 01, 2019.. DOI:https://doi.org/10.1016/S2213-8587(19)30006-3

v Batshaw ML, Groft SC, Krischer JP. Research into rare diseases of childhood. JAMA. 2014;311(17):1729-1730. Available from: 10.1001/jama.2013.285873

vi The United Kingdom Department of Health & Social Welfare. The UK Rare Diseases Framework. January 9, 2021. [Cited 2022 Apr 6]. Available from: https://apcp.csp.org.uk/news/2021-07-29-uk-rare-diseases-framework

vii Shire. Rare Disease Impact Report: Insights from patients and the medical community. April 2013. [Cited Apr 6]. Available from: https://globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf

viii Sawyer SL et al.. Utility of whole-exome sequencing for those near the end of the diagnostic odyssey: time to address gaps in care. Clin Genet. 2016 Mar;89(3):275-84. doi: 10.1111/cge.12654. [Cited 2022 Apr 6] Available from : https://pubmed.ncbi.nlm.nih.gov/26283276/

SOURCE Takeda Canada Inc.

Amanda Jacobs, [email protected], +1 647-798-2231

Modal title

Organization Profile

Takeda Canada Inc.

    Also from this source

  • Takeda's HyQvia® receives expanded market authorization as maintenance therapy for chronic inflammatory demyelinating polyneuropathy (CIDP)

  • Héma-Québec to Reimburse HyQvia® for the Treatment of Immunodeficiencies in Adult and Pediatric Patients Over 2 Years of Age

  • Takeda Recognized as a Top Employer in Canada for Third Consecutive Year

Contact Cision

  • 866-245-2317
    from 8 AM - 10 PM ET
  • Become a Client
  • Request a Demo
  • Editorial Bureaus
  • Partnerships
  • General Enquiries
  • Media

Products

  • Cision Communications Cloud®
  • Media Monitoring
  • Content Distribution
  • Multimedia Distribution
  • Measurement & Analytics
  • Investor Relations

About

  • About Cision Canada
  • About Cision
  • Media Partners
  • Careers
  • Accessibility Statement
  • APAC
  • APAC - Simplified Chinese
  • APAC - Traditional Chinese
  • Brazil
  • Canada
  • Czech
  • Denmark
  • Finland
  • France
  • Germany
  • India
  • Indonesia
  • Israel
  • Japan
  • Korea
  • Mexico
  • Middle East
  • Middle East - Arabic
  • Netherlands
  • Norway
  • Poland
  • Portugal
  • Russia
  • Slovakia
  • Spain
  • Sweden
  • United States
  • Vietnam

My Services

  • All News Releases
  • Online Member Centre
  • Next Gen Communications Cloud
  • Cision Communications Cloud®
  • my CNW

Do not sell or share my personal information:

  • Submit via [email protected] 
  • Call Privacy toll-free: 877-297-8921

Contact Cision

Products

About

My Services
  • All News Releases
  • Online Member Centre
  • Next Gen Communications Cloud
  • Cision Communications Cloud
  • my CNW
877-269-7890
from 8 AM - 10 PM ET
  • Terms of Use
  • Information Security Policy
  • Site Map
  • Cookie Settings
  • Accessibility Statement
Copyright © 2025 CNW Group Ltd. All Rights Reserved. A Cision company.