Shows
Commercializing Living Therapies with CCRMEnabling patient access to cell and gene therapiesFeaturing:Durhane Wong-Rieger, PhD, President and CEO, Canadian Organization for Rare DisordersJacqueline Barry, PhD, Chief Clinical Officer, Cell and Gene Therapy Catapult***In this episode, we dive into the critical topic of enabling patient access to cell and gene therapies with two leaders in the field. Jacqueline Barry, an expert in the development and adoption of advanced therapies, shares her insights on the challenges involved with bringing innovative treatments to patients, from regulatory hurdles to affordability concerns. Durhane Wong-Rieger, an advocate for people living with rare diseases, discusses the unique...2025-02-1528 min
Longwoods Healthcare Services RadioFrom Approval to Access How will Canadians See the Full Potential of Gene TherapyGene therapy has emerged as an exciting innovation for Canadians with rare diseases. As more gene therapy treatments gain approval in Canada, there is promise for transforming and advancing healthcare, especially in areas of high unmet need. Access to those new therapies, however, remains challenging. Join us to discover the untapped potential of gene therapy in Canada as this panel of experts addresses the barriers to access and explores innovative solutions to overcome them, ensuring every Canadian who needs it can access gene therapy with timely, equitable, and effective delivery.
Featuring:
Durhane Wong-Rieger, President and CEO, C...2024-08-0554 min
Hub PodcastsHub Headlines: It's time to kickstart CanadaHub Headlines features audio versions of the best commentaries and analysis published daily in The Hub. Enjoy listening to original and provocative takes on the issues that matter while you are on the go. 0:19 - It’s time to kickstart Canada, by Taylor Jackson, Sean Speer, and Stephen Staley 10:37 - Rare disease patients suffer while Canadian governments dither, by Durhane Wong-Rieger This program is narrated by automated voices. If you enjoy The Hub’s podcasts consider subscribing to our weekly email newsletter featuring our best insights and analysis. Free...2024-07-0317 min
Hub PodcastsHub Dialogues: Durhane Wong-Rieger on rare disorders and the risks of single-payer pharmacareDurhane Wong-Rieger, the president and CEO of the Canadian Organization for Rare Disorders, discusses the challenges that Canadians with rare disorders face in getting access to drugs and the risk that single-payer pharmacare exacerbates them by focusing too much on cost control and too little on the benefits of personalized medicine. This episode was made possible by the Canadian Life and Health Insurance Association and the generosity of listeners like you. Donate today. The Hub Dialogues features The Hub's editor-at-large, Sean Speer, in conversation with leading entrepreneurs, policymakers, scholars, and thinkers on the...2024-07-0131 min
Gene Therapy for Hemophilia: Dream or Reality?How Might Gene Therapy Be Funded In Canada?Gene therapy—a high-cost, one-time, potentially life-changing treatment—presents unique challenges for governments that make decisions on funding innovative treatments. Dr. Durhane Wong-Rieger presents creative ideas on new ways to think about how gene therapy for hemophilia A and B could be funded in Canada. Durhane is a health coach, frequent lecturer and author. She is the President and CEO of the Canadian Organization for Rare Diseases and chair of Rare Diseases International.Canadian Hemophilia SocietySee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.2023-12-1220 min
Living With Cystic FibrosisDurhane Wong-Reiger, expert on access in low income CountriesDr. Durhane Wong-Rieger is the President and CEO for the Canadian Organization for Rare Disorders. She is involved and Chair to many committees and organizations. She is also an author, lecturer and trainer. She is the perfect person to talk with about making healthcare a level playing field for all. As you know we have interviewed so many people on this podcast talking about the challenges in different countries to medications. In Egypt the Ministry of health doesn’t recognize the disease, CF families there don’t have the basics like liquid vitamins for their infants. In Thailand, it’s the s...2023-08-2850 min
Life and ScienceAdvocacy in rare disease: Surveying the landscapeIn this podcast, first episode in the 2023 Science/AAAS Fondation Ipsen series on advocacy in rare disease, our guests examine the advocacy landscape, asking: what does advocacy entail,
who are advocates, what organizations are involved with rare disease
advocacy, what determines how umbrella organizations allocate resources,
and what is effective—examining success stories of when advocacy has
worked.
With:
Durhane Wong-Rieger, Ph.D. (Canadian Organization for Rare Disorders (CORD), Ontario, Canada)
Michael Manganiello (Pyxis Partners, Washington, DC)
Marc C. Patterson, M.D. (Mayo Clinic, Roc...2023-05-1157 min
The Pharma PodcastDr. Durhane Wong-Rieger - Bringing awareness to Rare Disease DayOn this episode of the Pharma Podcast, my extra-special guest is Dr. Durhane Wong-Rieger, President & CEO at Canadian Organization for Rare Disorders.To mark Rare Disease Day, which we celebrate on the last day of February, I can think of no better guest than Dr. Durhane Wong-Rieger to bring awareness to Rare Disease Day. She also gives a great overview of CORD and its mission.To learn more about CORD, upcoming events, or to make a donation, please visit: www.raredisorders.caYou can also follow CORD on social media:2023-02-1548 min
World of PromiseWorld Hemophilia Day and Expanding Access to Therapies for People with Bleeding DisordersMegan Adediran, President of the Hemophilia Foundation of Nigeria and Durhane Wong-Rieger, President and CEO of the Canadian Organization for Rare Disorders, join the podcast to talk about the importance of finding new and innovative ways to expand access to life-saving therapies for people living with bleeding disorders. 2022-04-1318 min
Diagram DialoguesEpisode 6 - Thomas Schinecker, Durhane Wong-Rieger on the future of diagnosticsFor decades, diagnostic tools have contributed to improving patient care by enabling patients and their clinicians to make medical decisions earlier and more accurately. What does the future of diagnostics look like? How can diagnostic tools and digitalisation support the transformation of healthcare? How can innovation help overcome access challenges?
These are some crucial questions that Dr Durhane Wong-Rieger and Thomas Schinecker are answering in the audio introductory moderated by Vivienne Parry.
Learn more at https://rochediagram.com/2022-03-1125 min
Science Will WinWhat’s Next For Gene Therapy?Gene therapy is at a pivotal moment. For eligible rare disease patients, the potential impact could be huge. So how can we support that potential to fruition and what will it mean if we do? In our season finale, host Adam Rutherford and guests take a peek into what a world with successful gene therapies could look like for patients, healthcare and society.Featuring guests:Durhane Wong-Rieger, President & CEO at Canadian Organization for Rare DisordersErik Paulsen, Chair, Institute for Gene TherapiesKarolina Hanslik, Former Senior Project Manager, EURORDISNikhil Gadre, Senior Director...2021-10-2931 min
Science Will WinThe Policy PuzzleAs with any new breakthrough medicine, entering the healthcare system comes with a host of obstacles and potential barriers. In this episode, Adam Rutherford and guests break down the big changes needed within the global healthcare ecosystem to ensure that, once approved, the therapies we’re researching now, like gene therapy, reach the patients who need them.Featuring guests:Bert Bruce, Regional President, North America, Rare Disease, Pfizer Brenda Cooperstone, Senior Vice President, Chief Development Officer, Rare Disease, PfizerDurhane Wong-Rieger, President & CEO at Canadian Organization for Rare DisordersEmily Crossley, Chief Executive Offi...2021-10-2228 min
Rare Care PodcastDurhane Wong-Rieger, PhD, Discusses the Challenges Faced by Rare Disease Patients in Canada Larry Luxner, senior correspondent for Rare Disease Advisor, interviews Durhane Wong-Rieger, PhD, president and CEO of the Canadian Organization for Rare Disorders (CORD) and chair of Rare Diseases International (RDI). Dr. Wong-Rieger talks about the challenges of diagnosing and treating diseases in Canada, as well as advancing access to therapies around the globe.2021-10-1315 min
Science Will WinGene Therapy – Behind the ScienceGene therapy is a revolutionary field of science that has the potential to transform lives. It presents this big question; What if we could treat a disease at its root cause, rather than just the symptoms? On the first episode of Science Will Win, host Adam Rutherford takes us through the history, science, and significance of gene therapy.Featuring guests:Dirk Vander Mijnsbrugge, Vice President, Medical Affairs, Rare Diseases, PfizerDurhane Wong-Rieger, President & CEO at Canadian Organization for Rare DisordersLaurence Woollard, Director, On The Pulse ConsultancySonal Bhatia, Chief Medical Officer...2021-10-0825 min
The New Horizon TalksEpisode 3: Advancing For and With PatientsThis podcast examines patient centricity in cell and gene therapy, exploring how care must be planned and delivered to be responsive to individual patient preferences, needs and values. What exactly does patient focus mean, when talking about advanced therapies? What should patients know before embarking on the therapy and how do patient advocacy organisations support patients in this process?
Guest:
· Durhane Wong-Rieger, Chair, Rare Disease International Council
----
Abbreviations:
· HTA: Health technology assessment
· ERNs: European reference networks2021-10-0628 min
The New Horizon TalksBonus episode: Advancing For and With PatientsThis podcast examines patient centricity in cell and gene therapy, exploring how care must be planned and delivered to be responsive to individual patient preferences, needs and values. What exactly does patient focus mean, when talking about advanced therapies? What should patients know before embarking on this therapy and how do patient advocacy organisations support patients in this process?
Guest:
• Durhane Wong-Rieger, Chair, Rare Disease International Council
Abbreviations:
· HTA: Health Technology Assessment
· ERNs: European Reference Networks2021-08-2719 minLife and ScienceFinding rare diseases in common placesTo improve treatment of rare diseases, it is critical that rare disease
detection approaches be improved, particularly in primary care settings
and in public health testing places such as health centers. These
environments constitute the front line for disease detection and play an
outsized role in protecting the public, particularly children.
Normally, emphasis is placed on testing for common diseases, which are
allocated most of the resources. But it could be argued that when
considered as a group, rare diseases are in fact common, and that
putting more resources toward their...2021-08-1659 min
From the Burgundy ChairsEpisode 16: Durhane Wong-Rieger on Canada’s Approach to a Rare Drugs Strategy
Earlier this year, the Government of Canada began a public consultation on their 2019 commitment for a national strategy to address high-cost rare drugs. Now, almost seven months after the start of the public consultation and years after their initial commitment, there are few details on the strategy itself or how the government intends to invest $500 million per year set to begin in 2022.
In this episode, Peter Cleary, a Principal at Santis Health, spoke to President and CEO of the Canadian Organization for Rare Disorder (CORD), Durhane Wong-Rieger. They discussed CORD’s advocacy for a health care system that works for those...2021-08-1222 min
Raw Talk Podcast#92: Producing and Pricing Drugs in CanadaPharmaceutical drugs are a pillar of modern healthcare - from preventative medicines to life-saving therapies. We therefore rely on pharmaceutical companies to discover, develop, and deliver new drugs to patients in need. We know that this process is both risky and expensive, but does that justify the drug prices we see in Canada today? Who decides what’s a fair drug price anyways? And what is the role of academic science in this whole operation? Join us as we answer these questions and more, with our expert guests: Dr Alison Symington, consultant with Life Sciences Ontario, describes the process of...2021-03-1047 min
Healthcare Goes DigitalPatient Partnerships: Challenges and Opportunities for Pharma with Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare DisordersDurhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders, joins Natalie Yeadon, Co-Founder & CEO at Impetus Digital. We explore how to best involve patients in all aspects of the drug lifecycle, innovative approaches to drug access and financing, and other topics related to rare disease treatment and advocacy.To find out more about Impetus: https://www.meetwithimpetus.comNatalie Yeadon LinkedIn: https://www.linkedin.com/in/natalieyeadon/Impetus Digital Website: https://www.impetusdigital.com/Impetus Digital LinkedIn: https://www.linkedin.com/company/impetus-digital/Impetus Digital Twitter: https...2020-12-1452 min
National Pharmaceutical Congress (NPC) PodcastS01 E01 Patient Groups in the Age of Covid-19Host Peter Brenders, Founder & CEO of Kontollo Health, interviews Durhane Wong-Rieger, President & CEO of the Canadian Organization for Rare Disorders (CORD) about patient groups in the age of Covid-19. Get full access to NPC Healthbiz Weekly at healthbiz.substack.com/subscribe2020-07-0916 min
The Benefits Connexion PodcastEpisode #6 - Funding for Rare Disorders and COVID-19Featuring Durhane Wong-Rieger, PhD, President & CEO, Canadian Organization for Rare Disorders (CORD).In this episode we have the pleasure of speaking with Durhane Wong-Rieger and exploring rare disorders in a world struggling to cope with COVID-19. Durhane explains the important role of CORD in advocating on behalf of rare disorders. She also speaks to the definition of a rare disorder and the number of individuals diagnosed in Canada. Plus we explore the difference between a drug for a rare disorder and an orphan drug as well as their cost and the public/private split for funding of these drugs.Finally, Du...2020-06-2641 min
ideacity On The AirDr. Durhane Wong-RiegerDr. Wong-Rieger argues that rare diseases actually aren’t as rare as you may think. As a rare disorders advocate and activist, she talks about the obstacles and the future for patients including diagnosis, treatment, community, research, and government support. Dr. Durhane has a PhD in psychology from McGill University and was professor at the University of Windsor, Canada. She is a trainer and frequent lecturer and author of three books and many articles.2019-12-2500 min
Empire Club of CanadaNational Pharmacare Expert Panel | November 28, 2018The Empire Club of Canada Presents:
National Pharmacare Expert Panel On How a National Pharmacare Plan and Regulatory Reforms Impact Ontario’s Patients, the Life Sciences Industry and Health System
The federal government is considering a national pharmacare plan and fundamental changes to how the prices of innovative medicines are regulated in Canada. How will these reforms affect Ontario’s patients and the province’s vibrant and growing life sciences sector? This Empire Club of Canada Luncheon Panel moderated by Ms. Jane Taber will feature a dynamic discussion with Canadian pollster Mr. Nik Nanos and leader...2018-11-2848 min
RARECastHealth Canada Scraps Plans for Orphan Drug FrameworkHealth Canada has derailed a long-fought effort to establish a framework for orphan drugs. Last month the agency, without warning, removed from its website all documents relating to the effort. The agency says its conducting a broader review of regulations and will now seek to address the aims of the orphan drug framework through other means. The decision is a blow to rare disease advocates in Canada, who view the move as a response to provincial governments who feared an orphan drug designation would be a license to charge high prices for medications. We spoke Durhane Wong-Rieger, president and CEO...2017-11-0819 min
RARECastA Push in Canada for a National Rare Disease StrategyOnly 60 percent of treatments for rare disorders make it into Canada and most get approved up to six years later than in the United States and Europe, according to the Canadian Organization for Rare Disorders. In an effort to change the rare disease landscape in Canada, CORD has released a multi-pronged rare disease strategy for the country. We spoke to Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders, about the need for a national strategy, the effort to pass a regulatory framework for orphan drugs, and what it will take to make a national strategy a...2016-02-1023 min