91 episodes

Welcome to P4A Let’s Talk Rare, a monthly podcast highlighting the most important developments in the world of rare diseases orphan drug, cell and gene therapy, hosted by Georgie Rack and Owen Bryant of Partners For Access. To find out more about Partners For Access and our commitment to sustainable orphan drug access for patients with high unmet need, visit partners4access.com

P4A Let's Talk Rare: The Life Science Podcast Partners4Access

    • Science
    • 5.0 • 52 Ratings

Welcome to P4A Let’s Talk Rare, a monthly podcast highlighting the most important developments in the world of rare diseases orphan drug, cell and gene therapy, hosted by Georgie Rack and Owen Bryant of Partners For Access. To find out more about Partners For Access and our commitment to sustainable orphan drug access for patients with high unmet need, visit partners4access.com

    World EPA Conference 2024 Special

    World EPA Conference 2024 Special

    Welcome to this month's episode of Let’s Talk Rare: The Life Science Podcast brought to you by Partners4Access. Host Georgie records this episode at the World EPA Conference in Amsterdam. She holds a panel discussion with Juliette Sinclair-Spence, Sandrine Ruiz, 

    Neil Grubert, and Seema Sondhi, and together we shared our experiences at the EPA conference. 





    We also shared our excitement for AI and patient experience topics, as well as the importance of sustainability and finding new pricing approaches in healthcare. Gain insights on inclusivity and involving patients in drug development. Get ready for a meaningful, engaging conversation that will leave you inspired.

    Take a deep dive into the benefits of tiered pricing, the challenges and concerns of companies and HTA agencies in joint HTA assessments, the importance of inclusivity, and the importance of involving and educating others.





    Juliette Sinclair-Spence: Bio and Quote

    LinkedIn

    Juliette is the Funder and Chairman of the AK Eye Foundation and is a committed 𝐀𝐜𝐚𝐧𝐭𝐡𝐚𝐦𝐨𝐞𝐛𝐚 𝐊𝐞𝐫𝐚𝐭𝐢𝐭𝐢𝐬 (𝐀𝐊) 𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐀𝐝𝐯𝐨𝐜𝐚𝐭𝐞. She has experienced this rare eye disease, and her key learning was that there is much that needs to be done on many fronts, including prevention, education, diagnosis, treatment, research, and support. Her passion for fighting against the disease led her to set up the first worldwide foundation focused on Acanthamoeba Keratitis.



     “I think involving patients in the drug development process is so important. We need to hear their voices and understand their journeys.”





    Sandrine Ruiz: Bio and Quote

    LinkedIn

    Sandrine, or Sandy as she likes to be called, is the Senior Director of MarketAccess, Pricing, and HEOR at Immunocore. She is an experienced Pricing & Market Access professional with 25+ years in the biopharmaceutical industry. She has hands-on experience in giving strategic and science-based input across the pharmaceutical development workflow, from early stage to late stage, into Market/Patient Access, Pricing & Reimbursement, Payer Strategy, Real World Evidence, Clinical Development, Clinical Operations, and Business Development.



    “I was really intrigued by the panel discussion on tiered pricing. It's such a hot topic right now, and it was interesting to hear the different perspectives on patient access. I'm also fascinated by digital information and the new trends in our field.”





    Neil Grubert: Bio and Quote

    LinkedIn

    Neil is an Independent Global Market Access Consultant and a multilingual pharmaceutical market access specialist with 30 years of experience tracking the global prescription drug and self-medication markets. He has spearheaded the establishment and growth of Decision Resources’ international market access business. As the author of more than 150 reports covering 20 mature and emerging markets, multiple therapeutic areas, and numerous industry issues, he has earned a reputation for extensive knowledge of market access environments around the world.



    “Yes, tiered pricing is definitely a challenging issue. Speaking of challenges, the EU HTA implementation has been causing many uncertainties for companies and HTA agencies. We need to navigate it carefully.”





    Seema Sondhi: Bio and Quote

    LinkedIn

    Seema is the Head of Payer Value and Access for the Vaccine Business Unit at Takeda. She is passionate about patient access to innovative medicines and has worked diligently in her country, regional, and global roles to ensure access to pharmaceuticals, vaccines, medical devices, and orphan drugs. This has been achieved through key activities such as influencing global clinical trial development to ensure the collection of appropriate evidence, all the way through to launching products at prices that allow good levels of patie

    • 28 min
    Rare Disease Day Special 2024: The Role of Genetic Diagnosis in Rare Conditions with Nick Meade

    Rare Disease Day Special 2024: The Role of Genetic Diagnosis in Rare Conditions with Nick Meade

    Welcome to this month's episode of the Let’s Talk Rare: The Life Science Podcast by Partners4Acess. Georgie and Owen are joined by Nick Meade, Head of Policy at Genetic Alliance, to discuss the challenges faced by rare patients in accessing life-saving medicines.

    Together they explore the EU joint HTA legislation coming into force in January 2025, and the importance of patient experience data. Nick explains that the challenges for rare patients remain the same, with diagnosis being the first hurdle. He highlights the progress being made in genetic diagnoses and screening but emphasizes the need for more harmonization in Europe. 



    Finally, they touch on the concept of patient experience data, which refers to the inclusion of patient perspectives and outcomes in decision-making processes. Nick emphasizes the importance of this data in understanding rare conditions and leveraging it for better access to treatments. They also discuss the various events and initiatives planned by Genetic Alliance for  the upcoming Rare Disease Day on February 29th, to raise awareness and share stories of rare conditions.






    Nick Meade Bio:

    Nick Meade is Head of Policy at Genetic Alliance, the largest alliance of organizations supporting people with genetic, rare and undiagnosed conditions in the UK. He has over twenty years of experience in the field and is a member of the NIHR Advanced Therapy Medicinal Product (ATMP) Group. 



    Episode Resources:

    Nick Meade on LinkedIn

    Genetic Alliance website

    Partners4Access website  

    P4A Let’s Talk Rare podcast on Apple

    • 24 min
    Celebrating 5 Years of P4A: Reflections on Rare Diseases, Cell and Gene Therapies, and Legislation in Europe

    Celebrating 5 Years of P4A: Reflections on Rare Diseases, Cell and Gene Therapies, and Legislation in Europe

    Hello and welcome to this special episode of Let’s Talk Rare: The Life Science Podcast as we celebrate 5 years of bringing you the podcast that is now the number one life science podcast across all platforms. We at Partners 4 Access want to thank every single one of our 35,000 subscribers and all the guests who have graced the podcast from the bottom of our hearts, we would not have gotten here without you. 



    A special episode calls for special guests, and joining us today are our in-house expert and Managing Partner at P4A, Sophie Schmitz, our host from 2018-2021, Aparna Krishnan, and Prasan Subedi, Access Strategy Team Lead at Pfizer. Together, we walk down memory lane and relive the high points and challenges of the past five years, and share insights on rare diseases and cell and gene therapies.


    Aparna Krishnan Bio:

    Aparna has over 10 years of experience in the pharmaceutical and healthcare industry. As part of the senior leadership team, her primary focus is on strategic corporate engagement, legal, financial operations, and human resources. She has previously worked as Manager of Life Sciences at IHS Markit and as Consultant at Parexel’s Commercialization unit, among others specializing in market access, pricing, and reimbursement.



    Sophie Schmitz Bio:

    Sophie is the managing partner at Partners 4 Access, a company that believes in a sustainable rare disease world, which means helping our clients unlock the true opportunity of orphan drugs and ATMPs. Her 20+ year career spans various disease areas and medical devices, successfully supporting the strategy development and operationalization for orphan drugs. She brings a wealth of commercial and access experience across orphan and cell and gene therapies to the benefit of clients. She plays an active role in advising clients on price and market access strategies, with the ultimate goal of optimizing fair access for all stakeholders in rare diseases.

    • 53 min
    Revolutionizing Patient Outcomes: The Power of Digital Health Solutions with RJ Kedziora

    Revolutionizing Patient Outcomes: The Power of Digital Health Solutions with RJ Kedziora

    In this podcast, Georgie, RJ, and Owen discuss revolutionizing patient outcomes and the power of digital health solutions. RJ, a healthcare industry expert, shares insights on the role of technology in improving patient care and the future of digital health. They also touch on RJ's involvement in triathlons and his passion for running. With a friendly and engaging tone, this podcast offers valuable insights into healthcare and the potential of digital solutions.



    RJ Kedziora Bio:

    Mr. Kedziora is the co-founder of Estenda Solutions, a leading company specializing in custom software and data analysis for healthcare and medical companies. With a remarkable journey spanning over 30 years, he possesses a deep understanding of designing, developing, and deploying successful software projects. His extensive experience enables him to provide valuable guidance and innovative insights, resulting in cost-effective solutions that improve patient outcomes.

    Mr. Kedziora received his M.B.A. from West Chester University and a Bachelor of Science in Computer Science from Duquesne University where he received the Excellence in Computer Science Award. He has spoken at numerous technical and healthcare conferences on a variety of topics and written or co-authored multiple articles focused on healthcare information technology, several published in peer-reviewed scientific journals.

    Social Media Links:

    FACEBOOK (BUSINESS): https://www.facebook.com/EstendaSolutions

    LINKEDIN: https://www.linkedin.com/in/rjkedziora/

    INSTAGRAM: https://www.instagram.com/estendasolutions/

    TWITTER: https://twitter.com/Estenda

    YOUTUBE: https://www.youtube.com/channel/UCuAfCbIFW0DmeI5PDS1PXcg

    • 28 min
    The Future of Patient Engagement and the Role of Technology in Healthcare with Iola Forster

    The Future of Patient Engagement and the Role of Technology in Healthcare with Iola Forster

    Welcome to this month's episode of the Let’s Talk Rare podcast by Partners4Acess. Georgie and Owen are joined by Iola Forster, Head of Publications and Portfolio at Karger Publishers, to discuss the future of patient engagement and the role of technology in healthcare. 

    Together, they cover the future of HCPs (healthcare practitioners) and patient engagement, highlighting the importance of technology and patient empowerment in driving this evolution. They also emphasize the need for equitable access to healthcare information.

    The conversation touches on the changing landscape of patient communication over the past fifteen years, with the advent of digital platforms and social media. They discuss how digitization has democratized access to health information and created opportunities for patients to connect with others facing similar conditions.

    They further explore the impact of digitization on the orphan drug and cell and gene therapy world, emphasizing the role of patient involvement in content creation and the use of multimedia resources like infographics to cater to diverse learning styles.

    Iola Forster Bio:

    Iola Forster is the Head of Publications and Portfolio at Karger Publishers. She has over fifteen years of experience in the publishing industry and is skilled at fostering partnerships between the life sciences, healthcare clients, and Karger. Iola brings a wealth of knowledge and expertise to the table.



    Episode Resources:

    Iola Forster on LinkedIn

    Karger Publishers website

    Partners4Access website  

    P4A Let’s Talk Rare podcast on Apple

    • 23 min
    Navigating the New EU HTA Regulation and Its Impact on ATMP Development

    Navigating the New EU HTA Regulation and Its Impact on ATMP Development

    Welcome to this month's episode of the Let’s Talk Rare podcast brought to you by Partners4Acess. Georgie and Owen are joined by Chloe Sheppard and Akshay Kumar to discuss the new EU HTA regulation set to be implemented in 2025. They explore the implications for drug developers of ATMPs, the attractiveness of the EU market, and the importance of proactive preparation for the upcoming changes. 

    The topics covered include: key milestones of the EU HTA regulation; the importance of drug developers of ATMPs and oncology medicines to not adopt a wait and watch strategy; the risks of ignoring this change and the potential impact on clinical development plans, commercialization strategies, and patient access; the opportunities the EU market presents; and the need to start planning and adapting internal processes to successfully navigate the new regulatory landscape.

    Chloe Sheppard Bio:

    Chloe serves as a Senior Consultant at Partners4Access, working closely with clients to craft custom solutions for their pricing and market access obstacles. Her motivation lies in transforming the immense potential of advanced medicines into tangible therapeutic benefits for patients.

    Akshay Kumar Bio:

    Akshay, a Partner at Partners4Access, brings over 13 years of experience assisting pharmaceutical companies in devising market access and pricing strategies that align with their broader commercial and organizational contexts. His expertise spans not only product-level solutions but also process improvements and capability enhancement. In addition to market access, Akshay is well-versed in various other aspects of drug commercialization, including opportunity assessments, product positioning, forecasting, customer insights, and organizational design.

    Episode Resources:

    Chloe’s LinkedIn

    Akshay’s LinkedIn

    Partners 4 Access Website

    • 16 min

Customer Reviews

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52 Ratings

52 Ratings

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