Portugal APDP is the association for people living with diabetes in Portugal, and the oldest such institution in the world. Deputy Clinical Director Dr Carolina Neves emphasises the APDP’s patient-centred approach to integrated diabetes care, its role in advocating for greater accessibility to treatments, why obesity treatment should be built into…
Belgium RaDiOrg aims to support rare disease patients and patient organisations in Belgium, defend their interests, and raise awareness of what can be devastating and little-understood conditions. Director Eva Schoeters – who joined the patient advocacy field following the diagnosis of her son with a rare condition – outlines some of…
UAE Friends of Cancer Patients (FoCP) is a non-profit organisation, founded in 1999, that supports cancer patients, their families, donors, and the overall community in the UAE. Director Aisha Abdulla Al Mulla highlights some of the FoCP’s key initiatives around early cancer detection and screening, where the UAE’s patient advocacy landscape…
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 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…
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 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 Marc Boutin, JD, CEO of the National Health Council (NHC),* introduces the organization and its mission to provide a united voice for the 160 million people in the US living with chronic diseases and disabilities and their family caregivers. He addresses the challenge faced by patients living with chronic diseases…
Opinion Monica Weldon, CEO and president of Bridge the Gap – SYNGAP Education and Research Foundation, shares her recent experience at the US Drug Law and Regulation course in Washington, DC and expands on the role that patient associations can play in the drug development process. In today’s environment of…
Spain Maria Begona Barragan Garcia, president of GEPAC – the Spanish Group of Patients with Cancer – discusses the necessity of the group and its role in Spain’s healthcare system, in addition to how the voice of the patients is now stronger than ever. GEPAC represents 88 different cancer organizations…
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