UAE Following the diagnosis of her daughter with a rare and debilitating condition eight years ago, Youmna Ouraybi Ghaziri has dedicated herself to advocating on behalf of her and other rare disease patients. Two years ago, she founded Ana Fareed Health Consultancy; a patient advocacy group that gives voice to rare…
Belgium Stefan Joris of the Belgian Cystic Fibrosis Association (BCFA) highlights the progress that has been made on cystic fibrosis screening of newborns and reimbursement of innovative modulator therapies in Belgium in the past few years. Joris also explains why the move to better integrate the patient voice into the country’s…
Belgium Dr Frank Nobels, one of Belgium’s leading endocrinologists and diabetologists, introduces the Belgian Diabetes Forum – a multi-stakeholder initiative which aims to create efficient policy engagement in diabetes and make better prevention of diabetes, better care and a higher level of well-being for people with diabetes a reality. Dr Nobels…
Belgium The concepts of patient-centricity and patient-centred healthcare systems have been much discussed in recent years but, in the opinion of Stefan Gijssels, there is still a long road to travel to fully realise them. Gijssels – a 20-year pharma industry veteran whose personal experience of cancer led to him joining…
Europe As part of the EU’s Pharmaceutical Strategy for Europe, the European Commission has come out with a set of proposals to revise EU pharmaceutical legislation. The reforms, which aim to make medicines more available and accessible across Europe by reducing regulatory exclusivity, speeding up review processes and reinforcing supply chains…
LatAm Latin America’s patient organisations are today playing a more important role than ever before in developing solutions to the continent’s most pressing healthcare challenges. Given the healthcare gaps that persist, LatAm’s rich tradition of democratic participation, and industry stakeholders’ continuously stated commitments to including the patient voice in their decision-making…
Global Sarah Pope Miksinski, executive director/CMS regulatory affairs, and Gregory Rullo, senior director regulatory affairs, at AstraZeneca discuss the need for common ground among regulators and industry when it comes to patient centricity and for strategic leadership to address differing regulatory control-strategy requirements. In today’s increasingly complex and intricate pharmaceutical landscape,…
USA While patient groups view the United States’ new Inflation Reduction Act as a positive move towards capping out-of-pocket drug costs for older Americans, the innovative pharma industry, after aggressively lobbying against it, still argues that the new legislation will hamper drug development. [The new law] is a significant step in…
USA Monica Weldon draws on her own experience as a rare disease patient advocacy group CEO to outline how such groups can work collaboratively with other stakeholders in drug development to better target funding and create a more patient-centric drug development process that ultimately gets better drugs to rare disease patients…
Global Two years into his role, Ipsen’s EVP and Chief Medical Officer Prof. Dr. med. Steven Hildemann MD discusses his vision of patient-centricity and how he is leading a medical transformation that puts data-driven insights at the core and aims to make a real difference to both clinical practice and patients’…
Global Bernie Zeiher, chief medical officer (CMO) of Astellas explains why the ‘patient-defined value’ of medicines is crucial to developing therapies that truly address patients’ unmet medical needs. Zeiher outlines some of Astellas’ work with patient advocacy groups to generate these insights, why a new era of real-world data (RWD) generation…
Global As complex cutting-edge therapies come online, industry sponsors are increasingly looking to engage with patients, caregivers, and advocacy groups earlier and more broadly in the drug development process to better understand their needs. However, as the below insights from four of Novartis Oncology’s patient engagement leads show, successfully integrating patient…
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