Importance of patient associations
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🎙️ In this episode, Dr. Ángela Lamarca, Medical Oncologist at Hospital Universitario Fundación Jiménez Díaz (Madrid), reflects on the critical role patient associations play in improving care, diagnosis, access to treatment, and long-term outcomes for patients with cholangiocarcinoma. Inspired by her participation in the AMMF Annual Conference in the United Kingdom, she shares key insights into how collaboration between clinicians and advocacy groups can transform the landscape of this and other rare cancers.
The discussion highlights the work of AMMF (The Alan Morement Memorial Fund, The Cholangiocarcinoma Charity) The Cholangiocarcinoma Charity), Dr. Lamarca explains how AMMF has become a leading example of advocacy by raising awareness, improving access to specialised care, supporting research initiatives, and influencing healthcare policy.
A major focus of the episode is the AMMF Cholangiocarcinoma Data Project (2001–2018), which analysed NHS (National Health Service) data from more than 50,000 patients across the UK. The initiative identified several key challenges, including low awareness among healthcare professionals, delayed diagnosis, regional disparities in access to expert care, and inconsistencies in treatment pathways.
https://doi.org/10.1016/j.jhepr.2023.100983
The conversation also reviews the “Rethink Liver Cancer” campaign and white paper presented in Westminster in 2024, designed to translate these findings into actionable policy recommendations. Among the most concerning observations discussed was that 50.5% of patients included in the analysis received no active treatment. https://ammf.org.uk/rethink-liver-cancer-white-paper/
The episode emphasises the key role of patient associations in supporting patients, improving awareness, and influencing cancer policies. Dr. Lamarca also reflects on the challenges of access to molecular testing and innovative treatments in Europe, emphasising how collaboration between patients and clinicians can drive meaningful progress in cancer care.
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🎧 3rd Edition TooMore Gi is also available at: transworldeditors.com/toomore-gi-3/