Season 3

The Rarely Heard Podcast is back with Season 3 now live!

We’ve shared two seasons of powerful stories from the rare disease community.

Now, we’re going even deeper, bringing fresh perspectives, new voices from across the space, and uncovering more stories that truly matter.

You can listen now on Apple, Spotify and Amazon.

Season 3, Episode 1: The importance of Specialist Services for rare disease patients and families

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.

This episode features a diverse group of voices, from patient advocates and researchers to clinicians, all working together to ensure that everyone affected receives the best possible care.

Season 3, Episode 2: Reaching underrepresented communities in rare disease care. 

We’re exploring inclusion and representation in rare diseases – and why, despite the UK’s ethnic and socio-economic diversity, health services and charity support are often underused by marginalised communities.

In rare diseases, where populations are small and understanding is limited, representation becomes even more vital. Yet not everyone’s experiences are equally reflected in research, services, or support. In this episode, we hear how two organisations are working to close this gap.

We’ll be talking about the practical steps that individuals and organisations can take to ensure their work is truly inclusive, accessible, and representative of the wider community. This episode brings together charity leaders and service providers, all working towards the same goal – making sure every voice is heard, and no community is left behind.

Season 3, Episode 3: Connecting voices – challenge and opportunity in patient group-industry collaborations.

We’re exploring collaboration in rare diseases between patient groups and the pharmaceutical industry – and why, despite shared goals, these partnerships can be challenging to navigate.

In rare diseases, where communities are small and treatment options are limited, strong collaboration becomes even more essential. Yet not everyone’s perspectives are equally understood or represented in the development of new and orphan medicines. In this episode, we hear from those working to strengthen these relationships and ensure lived experience plays a meaningful role in driving progress.

We’ll be talking about how patient groups and industry collaborate together to build trust, work transparently, and create partnerships that are genuinely respectful and mutually beneficial. This episode brings together leaders from across the rare disease community, all working towards the same goal – ensuring that innovation is shaped with, not just for, the people it aims to support.

Season 3, Episode 4: Shifting sands – the evolving world of rare dieasease 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 rare 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.

EPISODE COMING ON 22 APRIL 2026