Tagged with Patients

Global AVAC is a global advocacy group focused on HIV prevention. It aims to accelerate ethical research and effective deployment of HIV prevention tools while working to ensure their equitable access. In an exclusive PharmaBoardroom interview, AVAC Executive Director Mitchell Warren looks back on the terrific advances that HIV science has…

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…

USA Drawing on her experience as rare disease patient advocacy group SYNGAP1 Foundation’s founder and former president, Monica Weldon argues for the need to standardize genomic testing practices, warns against the possible ethical implications of individualized medicine, and makes a cause for a more holistic approach within rare disease communities.  …

Global Well-informed and data-driven healthcare decision making has never been more important. Healthcare systems across the world – in both developed and developing contexts – are grappling with the challenge of providing quality treatments and services to patients while ensuring that their money is well spent. At the forefront of helping…

Global New methodology for the 2024 Access to Medicine Index promises a stronger attempt to quantify whether drugs, vaccines, and diagnostics are actually making it all the way to patients in poorer countries around the world.   Industry stakeholders eagerly await the biennial publication of the Access to Medicine Index, a…

China Writing in the September 2023 edition of DIA’s Global Forum magazine, Shuting Li of Anhui Jimin Cancer Hospital and Xinfang Fan of Bayer Health Care Ltd. examine how Chinese clinical trials are increasingly focusing on patient engagement and patient centricity.   In recent years, with the Chinese government’s vigorous support…

UAE While patient advocacy is still less prevalent in the United Arab Emirates (UAE) than in other parts of the world and there are no UAE patient organisations among the World Patients Alliance’s almost 400 members, the voice of patients in the UAE is becoming louder and beginning to get heard…

Belgium Belgian healthcare performs strongly across most metrics and international comparisons, but – as elsewhere – there remains room for improvement in terms of integrating patient feedback and experience into the care cycle.   Patients are often left to navigate these challenges on their own, without a system in place to…

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…