Rarely Heard

Beacon
  • 5.0 (9)
  • MENTAL HEALTH
  • FORTNIGHTLY SERIES

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

    EPISODE 1

    The importance of specialist services for patients and families

    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 and LifeArc.

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

    EPISODE 2

    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 and LifeArc.

    58 min
See All Season 3 (2)

Ratings & Reviews

5
out of 5
9 Ratings

About

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.

Information

  • Creator
    Beacon
  • Episodes
    22
  • Seasons
    3
  • Rating
    Explicit
  • Copyright
    © 2021 Findacure and Same But Different
  • Show Website
    Rarely Heard