USA The National Organization for Rare Disorders (NORD) is set to host its annual Rare Diseases and Orphan Products Breakthrough Summit on October 18-19th. Ahead of the Summit, the Chair of NORD’s Board of Directors Kay Holcombe explains its significance for cross-stakeholder interaction and learning and why we are entering “a…
Europe The Lymphoma Coalition’s Natacha Bolaños outlines the fundamentals of the lymphoma patient experience today, the growing number of innovative new treatment options available, and the issues surrounding their integration as earlier lines of treatment. CAR-T is not necessarily the best treatment option for everyone. There could be other second-best…
Argentina Dr Guillermo Chantada, incoming president-elect of the International Society of Paediatric Oncology (SIOP) highlights the progress of paediatric oncology in Latin America and gives a call to arms to the global pharmaceutical industry to situate more research in this field in his continent. We could accelerate knowledge, save more…
UK Kathy Pritchard-Jones, Professor of Paediatric Oncology at University College London (UCL) and President of the International Society of Paediatric Oncology (SIOP) discusses the latest advancements in childhood cancer treatment, the importance of clinical research studies run based on mechanism of action, the excitement and concerns around CAR T therapies, and…
USA Patient advocate and regular PharmaBoardroom contributor Monica Weldon examines how healthcare’s data revolution has thus far largely ignored the patient voice and argues for a more inclusive approach to drive better, fairer outcomes. It is natural to want to be healthy, have healthy children, have the best quality of…
UK Zack Pemberton-Whiteley, CEO of UK-based blood cancer charity Leukaemia Care, discusses the importance of patient and patient organizations’ involvement in the decision-making process for therapy appraisals, the use of HTA, and his take on moving CAR-T cells to an earlier line of therapy. We are calling strongly for a…
Global Cancer is one of the most frightening words in any language but is especially heart-wrenching when it comes to children. João de Bragança, President of Childhood Cancer International (CCI) and Nicole Scobie, President of Zoé4life and CCI European Board Member, share CCI’s aims as the largest parent-led international organisation supporting…
USA Writing in the May edition of DIA’s Global Forum magazine, Erica Lyons, Sarrit Kovacs, Matthew Kowalik, and Jessica Lee from the Division of Gastroenterology, Office of New Drugs, CDER at the US FDA look at how patient input is increasingly being utilised in new drug development, its importance in assessing…
Global Rare disease patient advocate Monica Weldon outlines some of the ethical conundrums around embryonic gene editing. With CRISPR technology again in the news as part of the rush to develop COVID-19 treatments and vaccines, Weldon highlights the arguments for and against embryonic gene editing from a patient/parent perspective and makes…
Global Ipsen CEO David Loew took aim at the lip service often paid to the notion of ‘patient-centricity’ in pharma in conversation at the FT’s Global Pharmaceutical and Biotechnology Conference last week and explained how the industry should take on a wider and deeper role in shaping healthcare systems, thereby creating…
USA Ahead of the 2020 US National Organization for Rare Disorders (NORD)’s Rare Diseases and Orphan Products Breakthrough Summit, NORD president and CEO Peter L. Saltonstall outlines his hopes for the Summit, the impact of COVID-19 on the US rare disease community, and touches on the current reality and potential problems…
Opinion Jessica Scott, Takeda’s head of R&D patient engagement, highlights how a better understanding of the value of patient engagement across the healthcare stakeholder spectrum will drive better health outcomes and why keeping an open and curious mindset is crucial in this endeavour. By incorporating Patient Engagement (PE) into the…
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