Tagged with Advocacy

USA Nasha Fitter, a tech entrepreneur and CEO of the FOXG1 Research Foundation, discusses the radical shift in drug development led by a new generation of sophisticated parent-entrepreneurs. Following her daughter’s diagnosis with the ultra-rare neurodevelopmental disorder FOXG1 syndrome, Fitter co-founded the FOXG1 Research Foundation and Citizen Health. Her mission: to…

USA David Barrett has led the American Society of Gene & Cell Therapy (ASGCT) since 2018, guiding its evolution into the leading professional body for scientists, clinicians, industry leaders and patient advocates in cell and gene therapy. Founded in 1996, ASGCT now sits at the centre of research, education and policy…

USA Jeff Allen is the President & CEO of Friends of Cancer Research, a research policy and advocacy organisation based in Washington, DC. His organisation works to accelerate the development of cancer therapies through evidence-based policy and collaborative research partnerships. Allen highlights the importance of diagnostics and biomarker testing to help…

Brazil Rare diseases have long fallen through the cracks of Latin America’s health systems, but few figures have done more to change that reality than Toni Daher. What started as a father’s search for answers became Casa Hunter and, later, Casa dos Raros – a model of integrated, data-driven rare disease…

France Francois LAMY, Vice President of AFM-Téléthon and father of a child with Duchenne muscular dystrophy, shares how the organisation grew from a family-led initiative into a major force in rare disease research and advocacy. He highlights AFM’s role in launching Genethon and advancing gene therapy, while criticising the lack of…

Global Paola Barbarino, CEO of Alzheimer’s Disease International, shares her insights into the growing global challenge of the disease and the urgent need for action across all income settings. In this interview, she discusses the importance of post-diagnosis support, the burden on caregivers, the impact of stigma, and the role of governments…

Europe The European Brain Council (EBC) is a key player in advancing brain health research and policy across Europe, bringing together diverse voices to address the pressing issues of neurological and mental health. As Frédéric Destrebecq, the EBC’s Executive Director, explains, “We must restore the trust between science and society for…

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…

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…

Pharma Agnès Ducrot and Miklos Maróthy of CCI France Hongrie discuss their advocacy efforts in Hungary and the history of French investment in the country. They also discuss the challenges and opportunities facing companies currently operating in the country. Can you give our readers an overview of the Chamber’s activities here in…