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.
S3, E4. 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.
The Rarely Heard podcast is developed by Beacon for Rare Diseases. All content is created independently, and sponsors and supporters have no influence over editorial content.
8 Dec 2025
S3, E3. Connecting voices - challenge and opportunity in patient group-industry collaborations.
In this episode, we explore how new and orphan medicines are developed in the UK, shedding light on both the opportunities and the challenges along the way, including: the commercial realities, the personal stakes for patients urgently seeking treatment, and the broader system that shapes these journeys. Today, we examine the complex relationships between patient organisations and the pharmaceutical industry - unpacking what it means to collaborate, advocate, and push for progress from both sides of the table.
17 Nov 2025
S3, E2. Reaching underrepresented communities in rare disease care.
In this episode, we’re delving into the world of equity and inclusion in rare diseases, and the people leading the way to make care and research more representative for everyone affected. From tackling barriers to access, to exploring how charities and research can work better with underrepresented groups, this episode opens an important conversation about representation and what inclusion really looks like in practice.
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