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Advocacy.

The NRBDO has taken a position in favour of paid plasma collection:
Position Paper on Paid Plasma
  • Letter to F/P/T Ministers of Health in support of CBS efforts to negotiate public-private partnerships for the collection of plasma in Canada - August 2022
  • Letter to OPSEU in support of public-private partnerships for the collection of plasma in Canada - July 2022
  • Statement on the passing of Alberta 204 - November 2020​
  • Letter to Alberta MLAs in support of Bill 204 the Voluntary Blood Donations Repeal Act - September 2020
  • Letter to Senators re: Bill S-252 - June 2018
    • Response from Senator Wallin - June 2018
    • Follow up letter to members of the Senate Standing Committee reviewing Bill S-252 - November 2018
  • Submission to Expert Panel on Immune Globulins Product Supply and Related Impacts in Canada - October 2017
    • ​​Final Report of the Expert Panel on Immune Globulins Product Supply and Related Impacts in Canada 2018
  • Letter to BC Minister of Health - September 2017
  • Statement read at the Canadian Blood Services Open Board Meeting - June 2016​
  • Letter to Federal Minister of Health in support of Paid Plasma Collection - February 2016
  • Letter to Prov/Terr Blood Liaison Committee regarding Ontario Bill 21 - December 2014
  • Ontario Bill 21 Hearings: NRBDO Testimony December 2014
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The NRBDO requests improved patient engagement in product reviews:
  • Policy on Patient Organization Engagement in Product Reviews
  • Letter to CADTH regarding New Review Process - September 2020
  • Letter to CBS regarding Product Review Processes - September 2019
  • ​Letter to Deputy Ministers of Health regarding blood product review process - June 2018
  • Letter to CADTH requesting Patient Input in Blood Product Reviews - January 2018
The NRBDO requests home delivery of plasma protein products during COVID-19 pandemic:
  • Letter to Deputy Ministers of Health regarding COVID-19 home delivery - June 2020
  • Letter to Deputy Minister Spidel regarding COVID-19 response - April 2020
  • Letter to CBS and NAC regarding COVID-19 response - follow up - March 2020
  • ​Letter to National Advisory Council (NAC) regarding COVID-19 response - March 2020
  • ​Letter to CBS regarding home delivery - March 2020
The NRBDO requests a review of the secondary restriction on the use of
​Solvent Detergent Plasma (SDP):
  • ​Letter to National Advisory Committee on Blood and Blood Products - October 2018
  • ​Letter to the Prov./Terr. Blood Liaison Committee - February 2017

Other Advocacy Positions & Letters:
  • Position Statement on Distribution of Fractionated products and their replacements (Updated 2021) 
  • Position Statement on Blood Product Distribution (2018)​
  • Position Statement on a National Pharmacare Program
 
  • ​Letter to P/T MOH regarding formulary jurisdiction policy - July 2022
  • Letter to Federal MOH regarding a National Rare Disease Strategy - June 2022
  • Letter to P/T MOH regarding Distribution of fractionated products and their replacements - October 2021
  • PMPRB Guidelines Consultation Submission - February 2020
  • Letter to federal party leaders - October 2019
  • ​Letter to P/T MOH regarding consumer representatives on CBS board - March 2019
  • Letter in support of a move from a 1-yr to 3-month MSM deferral by CBS - December 2018
  • Letter to P/T Deputy Ministers of Health re: new blood product review process - June 2018
  • Letter to Innovative Medicines Canada re: travel reimbursement for medical professionals - June 2018
  • Questionnaire for Ontario Election Candidates - 2018
Summary Report
  • Ontario Pre-budget Submission, advocating for Comprehensive Care - February 2018
  • Letter to CADTH requesting Path for Patient Input in Blood Product Reviews - January 2018
  • Letter to CADTH requesting Path for Patient Input in Blood Product Reviews - CBS cover - January 2018
  • Letter to CBS regarding product tender process and outcomes, from CSACI and AMMI Canada, which the NRBDO also signed on to - December 2017
  • ​Letter to the Federal Minister of Health in support of the Orphan Drug Framework - January 2016
  • Letter in support of a move from a 5-yr to 1-yr MSM deferral by CBS - November 2015 
Press Release Announcing 1-yr deferral by the Minister of Health - June 2016
  • Letter in support of expanded newborn screening in Alberta - October 2015

Network of Rare Blood Disorder Organizations (NRBDO)/Réseau des Associations Vouées aux Troubles Sanguins Rares (RAVTSR)
​is incorporated under the Canada Not-For-Profit Organizations Act
  • Home
  • About
  • Advocacy
    • Plasma
    • Newborn Screening
  • Events
    • Conference Presentations 2020
    • Conference Presentations 2017
  • Resources
  • Member Portal
  • Contact