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CANADA: 

ARE WE READY FOR PERSONALIZED HEALTHCARE?

A Strategy for LifeHelp Bring Canada’s Rare Disease Strategy to Life!

Annual Rare Disease Day Gala    

1. Print the attached “Fight for our Lives” campaign image in colour if possible (use either English or French version attached)
2. Take a photo of yourself holding the image
3. Post the image to your personal Twitter, Facebook, Instagram and other accounts with either of the following text (English or French): 

• What condition or disorder to you have?
• Why are medicines important to you? 
• What will happen if you don’t have access to medicines?

A Strategy for Life Help Bring Canada’s Rare Disease Strategy to Life!

Annual Rare Disease Day Gala    

A Strategy for Life Help Bring Canada’s Rare Disease Strategy to Life!

Annual Rare Disease Day Gala    

Summer 2020 PMPRB Webinar Series

 

Webinar 2: What we heard and what we didn't hear at the PMPRB Public Forum - July 9, 2020 at 1pm. CORD's second webinar on the federal medicine price regulations will allow patients and other stakeholders react to what we heard at the PMPRB's July 8th Public Forum. Participants will help develop some of the issues that they can raise in the context of their individual and collective submissions. We also want to raise the questions that were not posed in the July 8th PMPRB Public Forum. PMPRB representatives and Board Members will be invited to attend this session. 

Webinar 2 Registration: https://bit.ly/CORDWEBINARPMPRB2

Webinar 3: Sharing and comparing feedback for the PMPRB Guidelines - July 16, 2020 at 12PM. CORD's third webinar on the federal medicine price regulations is an opportunity for stakeholders to compare their submission approaches (e.g., some are using case studies - others are developing broader data regarding impact), learn from each other's input, and empower and encourage others with limited experience in developing submissions to make their voices heard as part of this important process.

Webinar 3 Registration: https://bit.ly/CORDWEBINARPMPRB3

Webinar 1: Has the PMPRB removed the obstacles to access in its Guidelines? -June 25, 2020 (past event). In this webinar, health experts, patient representatives and other stakeholders will review and analyze the updated PMPRB guidelines, looking at what has changed, what hasn't, and what it all means for patients. Specifically, the webinar will investigate whether the changes have sufficiently addressed current barriers and not impose new barriers to new medicine launches in Canada. 

Webinar 1: 
Slide Deck
Webinar 1 Video Recording

Webinar 3: Sharing and comparing feedback for the PMPRB Guidelines -
July 30, 2020 at 12PM - 1PM EDT. Collaborating on Drug Pricing Guidelines for Cost-Effectiveness and Access. With the regulatory changes as implemented through the proposed guidelines, the PMPRB is transitioning from its legally mandated role of assuring non-excessive drug prices to a variety of other roles, namely (1) replacing the international market place as the determinant of fair drug prices; (2) assuming the societal role of determining the value of medicine and human life; (3) usurping the provincial/territorial responsibility to negotiate drug prices and manage drug budgets; and (4) underwriting private drug plans at the expense of the public drug plans.

Webinar 3 Registration: https://bit.ly/CORDWEBINARPMPRB3

Webinar 3 will be conducted as a deliberative dialogue among stakeholders with varied perspectives and unique vested interests to share experience, expertise, and best practices with the goal of encouraging differing opinions to be vigorously debated and resolved toward common, shared, compatible, and/or mutually respected perspectives. This webinar is intended as a beginning to on-going dialogue in a transparent collaborative process that acknowledges the legitimate interests of all parties with a goal to accommodating these in mutually beneficial solutions.

Panelists:

• Mike Drummond, Professor Health Economics, University of York, UK
• Fred Horne, Policy Analyst, former Alberta Minister of Health
• Dr. Aneal Khan, University of Calgary, Alberta Children's Hospital
• Ed Dybka, President & General Manager, Ipsen Biopharmaceuticals Canada
• Rosalie Wyonch, Policy Analyst, C.D. Howe Institute
• Durhane Wong-Rieger, President & CEO, CORD

• William Dempster, 3Sixty Public Affairs

Webinar 3 Registration: https://bit.ly/CORDWEBINARPMPRB3

Webinar 1: Has the PMPRB removed the obstacles to access in its Guidelines? -June 25, 2020 (past event). In this webinar, health experts, patient representatives and other stakeholders will review and analyze the updated PMPRB guidelines, looking at what has changed, what hasn't, and what it all means for patients. Specifically, the webinar will investigate whether the changes have sufficiently addressed current barriers and not impose new barriers to new medicine launches in Canada.  

Webinar 1: 
Slide Deck
Webinar 1 Video Recording

Webinar 2: What we heard and what we didn't hear at the PMPRB Public Forum - July 16, 2020 (past event)  CORD''s second webinar in our Summer Series on the federal medicine price regulations will allow patients and other stakeholders react to what we heard at the PMPRB''s July 8th Public Forum. Participants will help develop some of the issues that they can raise in the context of their individual and collective submissions. We also want to raise the questions that were not posed in the July 8th PMPRB Public Forum. PMPRB representatives and Board Members will be invited to attend this session.

Webinar 2:
Slide Deck
Webinar 2 Video Recording

Minister Hajdu, PMPRB: Your drug pricing approach is DEAD Wrong for Patients!

Patient Partners Leadership Training

Today, effective partnerships with patient leaders are more important than ever! Don't miss your chance to learn from patient, policy, and industry leaders in a highly innovative training format designed specifically for today's virtual environment. Not just for rare diseases, CORD's inaugural Patient Partners Leadership Training Program launches September 18th for 10 sessions, two hours interactive every other week with lots of opportunities in between. Speakers include international and Canadian experts from government, research, patient organizations, and industry

Who? Patient Advocates and Patient Partner Leaders from industry and other sectors who are interested in engaging as equal partners in exploration, discovery, and creation of roles as leaders in all phases of the drug lifecycle. Limited to 30 participants.

What? This program will enhance the capabilities of patients, patient advocates, and various stakeholder groups that are involved in drug development and access to partner effectively throughout all phases of the drug lifecycle from drug development to real-world management. New modules have been added to the overview. 

Where? Virtual, 2-hour live sessions (bi-weekly) with interactive small group capabilities that will include structured opportunities comprised of expert presentations from multiple sectors and post-session discussions and written assignments.

Why? Partnering with patients has transformed how drugs are discovered, developed, and made available. We have created a structured program with interactive opportunities, expert presentations, panel discussions, case studies, simulations, and deliberate dialogues. Patient advocates and other stakeholders will engage as equal partners in exploration, discovery, and creation of roles as leaders in a variety of patient partner situations .

When? From September 18, 2020 (includes a year-end holiday break) to February 5, 2021

For more information: Patient Partners Leadership Training Overview

Registration: Spots are limited and will be accepted to ensure a variety of affiliations and perspectives. To register, please submit an application through this link.

Patient Partners Leadership Training

Who? Patient Advocates and Patient Partner Leaders from industry and other sectors who are interested in engaging as equal partners in exploration, discovery, and creation of roles as leaders in all phases of the drug lifecycle. Limited to 30 participants.

What? This program will enhance the capabilities of patients, patient advocates, and various stakeholder groups that are involved in drug development and access to partner effectively throughout all phases of the drug lifecycle from drug development to real-world management. New modules have been added to the overview. 

Where? Virtual, 2-hour live sessions (bi-weekly) with interactive small group capabilities that will include structured opportunities comprised of expert presentations from multiple sectors and post-session discussions and written assignments.

Why? Partnering with patients has transformed how drugs are discovered, developed, and made available. We have created a structured program with interactive opportunities, expert presentations, panel discussions, case studies, simulations, and deliberate dialogues. Patient advocates and other stakeholders will engage as equal partners in exploration, discovery, and creation of roles as leaders in a variety of patient partner situations .

When? From September 18, 2020 (includes a year-end holiday break) to February 5, 2021

For more information: Patient Partners Leadership Training Overview

Registration: Spots are limited and will be accepted to ensure a variety of affiliations and perspectives. To register, please submit an application through this link.

The Canadian Organization for Rare Disorders (CORD) takes NO pleasure in announcing a new Webinar series on the PMPRB changes. But we urge you to join us. Because it is imperative that our policy makers fully understand the urgency to act now. It will take almost no time or attention away from the critical work on COVID-19. This is one catastrophe they can avert. Simply STOP the PMPRB changes.

Webinar 1: Patients Speak Out - 12:00pm on Wednesday, April 29, 2020. This webinar will include patients explaining their health conditions, the innovative drug therapies or clinical trials they are urgently waiting for, and the impact on their lives and wellbeing if these therapies are delayed or not available. A panel will discuss how the PMPRB changes will delay or even block these drugs from coming to Canada. 

Webinar 2: Drug Launches: What Influences the Decision to Deploy New Medicines? - 12:00pm on Wednesday, May 6, 2020. This webinar goes "behind" decisions to bring a drug and/or clinical trial to a specific jurisdiction, availability of "early access" or compassionate access programs, and availability of patient support programs. A panel will discuss how Canada has fared up to this time and the impact of the PMPRB changes, some of which has already happened.

IMPORTANT OPPORTUNITY to include Rare Disease Patients in global NonCommunicable Diseases advocacy

• Finance, accounting
• Grant writing
• Fundraising and special events
• Health policy development
• Public relations, communications
• Advocacy on a provincial/federal level
• Nonprofit, governance, management, administration experience

• Support the organization's mission, purposes, goals, policies, and programs while knowing its strengths and needs.
• Attend bi-monthly board meetings (via teleconference) and one or two in-person meetings throughout the year.
• Prepare for and participate actively in conference calls, telephone and email communications between these meetings, both with other Board members and CORD staff as necessary.
• Serve actively on committees of the Board.
• Contribute to activities and events hosted by the organization whenever possible.
• Support CORD's provincial/territorial activities respective to location
• Be fully apprised of CORD policies and positions to serve as spokesperson when requested and feasible.
• Suggest volunteers the Board who have attributes and commitment to make significant contributions to the work of the CORD and the progress of the organization.

Summer 2020 PMPRB Webinar Series

Has the PMPRB removed the obstacles to access in it''s Guidelines?

In this webinar, health experts, patient representatives and other stakeholders will review and analyze the updated PMPRB guidelines, looking at what has changed, what hasn't, and what it all means for patients. Specifically, the webinar will investigate whether the changes have sufficiently addressed current barriers and not impose new barriers to new medicine launches in Canada. 

Thursday, June 25, 2020 12PM - 1PM EDT

REGISTER AT https://bit.ly/CORDwebinarPMPRB1

Panelists:
Jason Field, Life Sciences Ontario
Dr. Aneal Khan, Alberta Children's Hospital, University of Calgary
Neil Palmer, PDCI Market Access
Stephanie Stavros, CF Get Loud Canada
Durhane Wong-Rieger, CORD

Moderator:
Bill Dempster, 3Sixty Public Affairs

The Canadian Organization for Rare Disorders (CORD) takes NO pleasure in announcing a new Webinar series on the PMPRB changes. But we urge you to join us. Because it is imperative that our policy makers fully understand the urgency to act now. It will take almost no time or attention away from the critical work on COVID-19. This is one catastrophe they can avert. Simply STOP the PMPRB changes.

Webinar 2: Drug Launches: What Influences the Decision to Deploy New Medicines? - 12:00pm on Wednesday, May 6, 2020. This webinar goes "behind" decisions to bring a drug and/or clinical trial to a specific jurisdiction, availability of "early access" or compassionate access programs, and availability of patient support programs. A panel will discuss how Canada has fared up to this time and the impact of the PMPRB changes, some of which has already happened. Panelist joining us; Craig Campbell, MD, MSc, FRCPC (London Health Science Centre), Fred Horne, Former Alberta Minister of Health and Andrea Souchen, Associate Director, Marketing and Patient Access (Sobi).

Webinar 1: Patients Speak Out - April 29, 2020 (past event) This webinar includes patients explaining their health conditions, the innovative drug therapies or clinical trials they are urgently waiting for, and the impact on their lives and wellbeing if these therapies are delayed or not available. A panel will discuss how the PMPRB changes will delay or even block these drugs from coming to Canada. 

Webinar 1 Slide Deck
Webinar 1 Video Recording

Applying Lessons from COVID-19 to Better Healthcare for Rare Diseases

Join us for a webinar on Apr 24, 2020 at 1:00 to 1:30 PM EDT.

Webinar 3: Sharing and comparing feedback for the PMPRB Guidelines -
July 30, 2020 at 12PM - 1PM EDT. Collaborating on Drug Pricing Guidelines for Cost-Effectiveness and Access. With the regulatory changes as implemented through the proposed guidelines, the PMPRB is transitioning from its legally mandated role of assuring non-excessive drug prices to a variety of other roles, namely (1) replacing the international market place as the determinant of fair drug prices; (2) assuming the societal role of determining the value of medicine and human life; (3) usurping the provincial/territorial responsibility to negotiate drug prices and manage drug budgets; and (4) underwriting private drug plans at the expense of the public drug plans.

Webinar 3 Registration: https://bit.ly/CORDWEBINARPMPRB3

Webinar 3 will be conducted as a deliberative dialogue among stakeholders with varied perspectives and unique vested interests to share experience, expertise, and best practices with the goal of encouraging differing opinions to be vigorously debated and resolved toward common, shared, compatible, and/or mutually respected perspectives. This webinar is intended as a beginning to on-going dialogue in a transparent collaborative process that acknowledges the legitimate interests of all parties with a goal to accommodating these in mutually beneficial solutions.

Panelists:

• Mike Drummond, Professor Health Economics, University of York, UK
• Fred Horne, Policy Analyst, former Alberta Minister of Health
• Ed Dybka, President & General Manager, Ipsen Biopharmaceuticals Canada
• Rosalie Wyonch, Policy Analyst, C.D. Howe Institute
• Durhane Wong-Rieger, President & CEO, CORD

• William Dempster, 3Sixty Public Affairs

Webinar 3 Registration: https://bit.ly/CORDWEBINARPMPRB3

Webinar 1: Has the PMPRB removed the obstacles to access in its Guidelines? -June 25, 2020 (past event). In this webinar, health experts, patient representatives and other stakeholders will review and analyze the updated PMPRB guidelines, looking at what has changed, what hasn't, and what it all means for patients. Specifically, the webinar will investigate whether the changes have sufficiently addressed current barriers and not impose new barriers to new medicine launches in Canada.  

Webinar 1: 
Slide Deck
Webinar 1 Video Recording

Webinar 2: What we heard and what we didn't hear at the PMPRB Public Forum - July 16, 2020 (past event)  CORD''s second webinar in our Summer Series on the federal medicine price regulations will allow patients and other stakeholders react to what we heard at the PMPRB''s July 8th Public Forum. Participants will help develop some of the issues that they can raise in the context of their individual and collective submissions. We also want to raise the questions that were not posed in the July 8th PMPRB Public Forum. PMPRB representatives and Board Members will be invited to attend this session.

Webinar 2:
Slide Deck
Webinar 2 Video Recording

The Canadian Organization for Rare Disorders (CORD) takes NO pleasure in announcing a new Webinar series on the PMPRB changes. But we urge you to join us. Because it is imperative that our policy makers fully understand the urgency to act now. It will take almost no time or attention away from the critical work on COVID-19. This is one catastrophe they can avert. Simply STOP the PMPRB changes.

Webinar 1: Patients Speak Out - 12:00pm on Wednesday, April 29, 2020. This webinar will include patients explaining their health conditions, the innovative drug therapies or clinical trials they are urgently waiting for, and the impact on their lives and wellbeing if these therapies are delayed or not available. A panel will discuss how the PMPRB changes will delay or even block these drugs from coming to Canada. 

Webinar 2: Drug Launches: What Influences the Decision to Deploy New Medicines? - 12:00pm on Wednesday, May 6, 2020. This webinar goes "behind" decisions to bring a drug and/or clinical trial to a specific jurisdiction, availability of "early access" or compassionate access programs, and availability of patient support programs. A panel will discuss how Canada has fared up to this time and the impact of the PMPRB changes, some of which has already happened.

Patient Partners Leadership Training

Today, effective partnerships with patient leaders are more important than ever! Don't miss your chance to learn from patient, policy, and industry leaders in a highly innovative training format designed specifically for today's virtual environment. Not just for rare diseases, CORD's inaugural Patient Partners Leadership Training Program launches September 18th for 10 sessions, two hours interactive every other week with lots of opportunities in between. Speakers include international and Canadian experts from government, research, patient organizations, and industry

Who? Patient Advocates and Patient Partner Leaders from industry and other sectors who are interested in engaging as equal partners in exploration, discovery, and creation of roles as leaders in all phases of the drug lifecycle. Limited to 30 participants.

What? This program will enhance the capabilities of patients, patient advocates, and various stakeholder groups that are involved in drug development and access to partner effectively throughout all phases of the drug lifecycle from drug development to real-world management. New modules have been added to the overview. 

Where? Virtual, 2-hour live sessions (bi-weekly) with interactive small group capabilities that will include structured opportunities comprised of expert presentations from multiple sectors and post-session discussions and written assignments.

Why? Partnering with patients has transformed how drugs are discovered, developed, and made available. We have created a structured program with interactive opportunities, expert presentations, panel discussions, case studies, simulations, and deliberate dialogues. Patient advocates and other stakeholders will engage as equal partners in exploration, discovery, and creation of roles as leaders in a variety of patient partner situations .

When? From September 18, 2020 (includes a year-end holiday break) to February 5, 2021

For more information: Patient Partners Leadership Training Overview

Registration: Spots are limited and will be accepted to ensure a variety of affiliations and perspectives. To register, please submit an application through this link.

Summer 2020 PMPRB Webinar Series

 

Webinar 2: What we heard and what we didn't hear at the PMPRB Public Forum - July 9, 2020 at 1pm. CORD's second webinar on the federal medicine price regulations will allow patients and other stakeholders react to what we heard at the PMPRB's July 8th Public Forum. Participants will help develop some of the issues that they can raise in the context of their individual and collective submissions. We also want to raise the questions that were not posed in the July 8th PMPRB Public Forum. PMPRB representatives and Board Members will be invited to attend this session. 

Webinar 2 Registration: https://bit.ly/CORDWEBINARPMPRB2

Webinar 3: Sharing and comparing feedback for the PMPRB Guidelines - July 16, 2020 at 12PM. CORD's third webinar on the federal medicine price regulations is an opportunity for stakeholders to compare their submission approaches (e.g., some are using case studies - others are developing broader data regarding impact), learn from each other's input, and empower and encourage others with limited experience in developing submissions to make their voices heard as part of this important process.

Webinar 3 Registration: https://bit.ly/CORDWEBINARPMPRB3

Webinar 1: Has the PMPRB removed the obstacles to access in its Guidelines? -June 25, 2020 (past event). In this webinar, health experts, patient representatives and other stakeholders will review and analyze the updated PMPRB guidelines, looking at what has changed, what hasn't, and what it all means for patients. Specifically, the webinar will investigate whether the changes have sufficiently addressed current barriers and not impose new barriers to new medicine launches in Canada. 

Webinar 1: 
Slide Deck
Webinar 1 Video Recording

The Canadian Organization for Rare Disorders (CORD) takes NO pleasure in announcing a new Webinar series on the PMPRB changes. But we urge you to join us. Because it is imperative that our policy makers fully understand the urgency to act now. It will take almost no time or attention away from the critical work on COVID-19. This is one catastrophe they can avert. Simply STOP the PMPRB changes. 

Webinar 3: Alternative Approaches to Innovative Drug Pricing - May 13, 2020. The third webinar will review Canada's approach to managing drug prices with approaches used in other jurisdictions. A panel will discuss experiences with oncology therapies, rare disease drugs, and therapies for pandemics and other urgent situations as points of reference toward evolving alternatives to the proposed PMPRB guidelines.

Panel:
Martina Garau, Director, Office of Health Economics, UK; 
Sandra Anderson, Senior VP, Innomar Strategies
PG Forest, Director, School of Public Policy, University of Calgary
Durhane Wong-Rieger, President & CEO, CORD
Moderator:  Bill Dempster, 3Sixty Public Affairs

Webinar 1: Patients Speak Out - April 29, 2020 (past event). This webinar includes patients explaining their health conditions, the innovative drug therapies or clinical trials they are urgently waiting for, and the impact on their lives and wellbeing if these therapies are delayed or not available. A panel will discuss how the PMPRB changes will delay or even block these drugs from coming to Canada. 

Webinar 1 Slide Deck
Webinar 1 Video Recording

Webinar 2: Drug Launches: What Influences the Decision to Deploy New Medicines? - May 6, 2020 (past event). This webinar goes "behind" decisions to bring a drug and/or clinical trial to a specific jurisdiction, availability of "early access" or compassionate access programs, and availability of patient support programs. A panel will discuss how Canada has fared up to this time and the impact of the PMPRB changes, some of which has already happened.

Webinar 2 Slide Deck
Webinar 2 Video Recording