Rarely Heard

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Rarely Heard is a rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with some of the world's rarest diseases as these should not be Rarely Heard, but widely shared.

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  1. The importance of specialist services for patients and families

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    The importance of specialist services for patients and families

    In today’s episode, we’re diving into the world of Specialist Services - clinics that provide expert, coordinated care for people and families living with rare or complex conditions. These services play a vital role, not only for those directly affected but also for the wider healthcare system. We’ll be exploring the innovations, challenges, and collaboration models that shape these services, and the impact they have on patients, families, and healthcare as a whole. Today’s episode features the following speakers: - Professor Timothy Barrett, Senior paediatrician and researcher at the University of Birmingham and at Birmingham Women’s and Children’s Hospital - Karen Harrison, Director of Support at Alex – The Leukodystrophy Charity - Georgina King, Family Support Coordinator at Wolfram Syndrome UK - Professor Richard Steeds, Clinical Cardiologist and Lead of the Department of Cardiovascular Science at the University of Birmingham If you enjoyed this podcast don’t forget to like, rate and subscribe so you never have to miss out! Rarely Heard Season three is supported by Alexion, LifeArc and Costello Medical. All content is created independently by Beacon for Rare Diseases and sponsors and supporters have no influence over editorial content.

    53분
  2. Reaching underrepresented communities in rare disease care.

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    Reaching underrepresented communities in rare disease care.

    Despite the UK’s rich ethnic and socio-economic diversity, it’s widely recognised that health services and charity support are often underused by marginalised communities.In rare diseases, where patient populations are dispersed and understanding is often limited, representation becomes even more significant. Yet not everyone’s experiences are reflected equally in research, services, or support. In this episode of Rarely Heard, we explore how two organisations are tackling this challenge.Charity leaders and service providers are eager to address these inequalities and make their services accessible to everyone who needs them, but how? What can organisations and individuals do, in practical terms, to ensure their work is truly inclusive and representative of the wider community?Come listen to find out!Today’s episode features the following speakers: -Kerry Leeson-Beevers, CEO of Alström Syndrome UK and founder of Breaking Down Barriers -Catherine Lewis, Operations Manager at Alström Syndrome UK -Hannah Stark, Operations Lead at the NIHR BioResource If you enjoyed this podcast don’t forget to like, rate and subscribe so you never have to miss out! Rarely Heard Season three is supported by Alexion, LifeArc and Costello Medical. All content is created independently by Beacon for Rare Diseases and sponsors and supporters have no influence over editorial content.

    58분

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    Connecting voices - challenge and opportunity in patient group-industry collaborations.

    In this episode, we’re diving into collaboration in rare diseases between patient groups and the pharmaceutical industry. From navigating challenges to building trust, we explore how patient groups and industry can come together as genuine partners, shaping a future where progress is co-created. Across the UK, collaboration is widely recognised as essential to accelerating research and improving outcomes. Yet despite shared goals, patient groups and industry often face barriers: different expectations, limited resources, and uncertainty about how to work together effectively and ethically. In rare diseases, where communities are small and needs are urgent, the potential of strong partnerships becomes even more important. Today, we speak to those bridging this gap - people committed to ensuring that patient voices are not only heard but truly embedded in decision-making. What does successful collaboration look like in practice? How can organisations build relationships that are respectful, transparent, and mutually beneficial? And what opportunities can open up when lived experience and scientific innovation meet? Come listen to find out! Today’s episode features the following speakers: -Rick Thompson, CEO at Beacon for Rare Diseases -Dr Amit Aggarwal, Executive Director of Medical Affairs & Strategic Partnerships at the ABPI (The Association of the British Pharmaceutical Industry) -Kirsty Hoyle, CEO of Metabolic Support UK -Sara Taylor, Patient Partnerships Manager (UK & Ireland), Patient Centricity at Astellas If you enjoyed this podcast don’t forget to like, rate and subscribe so you never have to miss out! Rarely Heard Season three is supported by Alexion, LifeArc and Costello Medical. All content is created independently by Beacon for Rare Diseases and sponsors and supporters have no influence over editorial content.

    1시간 31분

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    Shifting sands: the evolving world of rare disease policy

    2026 is a big year for rare diseases in the UK. The extension of the rare disease framework to February 2027 has created a window of opportunity for the community to make the case for a renewed and revitalised piece of policy for rare disease. This comes at the time when the government has published its ten-year plan for Health in England, when the national medicines regulator, the MHRA, is creating new pathways for rare disease medicines, and when NICE have reviewed cost effectiveness thresholds. Alongside this, the UK has seen a number of new rare disease research networks, designed to accelerate the development of new rare disease therapies. All of this creates an exciting moment in the rare ecosystem, where the UK could position itself as a leader in rare disease research and care, to the benefit of all those people living with a are disease. In this episode, Beacon CEO and a panel of experts from Genetic Alliance UK, LifeArc, the MHRA and the UK Bioindustry Association discuss UK rare disease policy in 2026, and the opportunities for the whole rare disease community. Today’s speakers: Rick Thompson - CEO, Beacon for Rare Diseases Nick Meade - CEO, Genetic Alliance UK Alessandra Gaeta – Head of Rare Disease, LifeArc Julian Beach - Interim Executive Director Healthcare Quality and Access, MHRA Rosie Lindup – Senior Policy and Public Affairs Manager, Bio Industry Association If you enjoyed this podcast don’t forget to like, rate and subscribe so you never have to miss out! Rarely Heard Season three is supported by Alexion, LifeArc and Costello Medical. All content is created independently by Beacon for Rare Diseases and sponsors and supporters have no influence over editorial content.

    1시간 11분
시즌 3 모두 보기(4개)

소개

Rarely Heard is a rare disease podcast series that exists to share the stories, experiences, knowledge, insights and voices of those living with some of the world's rarest diseases as these should not be Rarely Heard, but widely shared.

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  • 제작진
    Beacon
  • 에피소드
    24
  • 시즌
    3
  • 등급
    무삭제판
  • 저작권
    © 2021 Findacure and Same But Different
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    Rarely Heard