• World Kidney Day 2025: Detect early, protect kidney health 

    Chronic kidney disease (CKD) is a major global health issue – affecting an estimated 1 in 10 people – yet it is frequently overlooked on health agendas worldwide. In its early stages, CKD is often asymptomatic, and many individuals are unaware that they have CKD until the disease has progressed to later stages, where it becomes harder and more costly to treat – with patients facing the prospect of dialysis or kidney transplant. This makes early CKD detection critical to improving patient outcomes and reducing the growing health and economic burden of CKD worldwide. Recognising this, the World Kidney Day campaign this year is centred around the theme: “Detect early, protect kidney health.” 

  • Rare Disease Day 2025: Reflecting on a year of progress and the challenges that lie ahead  

    Rare Disease Day presents a time to reflect on the progress made in understanding and addressing the unique challenges that rare diseases bring – and the hurdles that remain. Over the past year, several significant developments have shaped the rare disease landscape, from new regulatory policies and technological advancements to major advocacy efforts.  

  • NEWS: England faces £1.2 billion in healthcare costs if Covid-19 lockdown alcohol consumption trends persist to 2035 

    When the Covid-19 pandemic hit in early 2020, drinking habits shifted significantly for many. But what happens when those pandemic-era drinking habits stick around? Recent research from HealthLumen explores the long-term consequences of changes in alcohol consumption during the pandemic, and the findings are stark: if those patterns continue until the end of 2035, England could face nearly 10,000 additional premature deaths, over 147,000 excess cases of disease, and £1.2 billion extra in healthcare costs.

  • Join HealthLumen at key upcoming rare disease conferences in Q4 2024 

    HealthLumen are looking forward to discussing our work on the prevalence of rare diseases and engaging with colleagues dedicated to accelerating rare disease therapeutics at several upcoming conferences in the final quarter of this year.

  • Supporting rare disease patient advocacy with epidemiological insights

    Awareness of the vast impact of rare diseases, which affect approximately 300 million people globally (1), has significantly increased over the years, leading to increased funding and investment in rare disease research and therapy development.   Although more than half of the novel drug approvals by the FDA’s Center for Drug Evaluation and Research last […]

  • The role of precision epidemiology in R&D decision-making: Spotlight on rare genetic diseases

    Rare genetic diseases are challenging to treat due to their complexity, the unique nature of each condition, and the – by definition – small numbers of patients affected by each one.  Encouragingly for the rare disease community, the field is moving rapidly with a wide variety of innovative therapies being developed, including gene therapy involving […]

  • Securing Europe’s competitiveness in R&D for people living with rare diseases: Key takeaways from Rare Diseases Forum 2024

    Background Set against the backdrop of the Belgian Presidency of the Council of the EU, Rare Diseases Forum came to Brussels this year on April 16th, bringing together a wide range of stakeholders to discuss a European rare disease Action Plan that aims to help Europe secure competitiveness in R&D for rare disease therapies.  Although […]