Rarely Heard season two is produced by the UK based rare disease charity Beacon.

Beacon is a UK charity that is building the rare disease community to drive research and develop treatments.

They exist to transform the world’s understanding of rare diseases and the devastating impact they have on people’s lives.

 Rarely Heard season one was collaboratively produced by Beacon and Same but Different.

Same but Different uses the arts for positive social change. They create thought-provoking campaigns that stimulate conversation, change attitudes and empower those affected.

  • Beacon logo
  • Same but Different logo

 Meet the team

  • Philippa Norman

    Rarely Heard host

    Philippa joined the Beacon team as Projects Coordinator in November 2019, she is originally from Yorkshire but now lives in Cambridge.She enjoys sewing, singing, swimming and paddleboarding. Her favourite thing about hosting the Rarely Heard podcast series is being able to talk to so many people from across the rare community and have the privilege of hearing about their unique stories and experiences. Philippa wants to create an open dialogue about the challenges that so many in the rare community face.

  • Ilmarie Braun

    Rarely Heard host

    Ilmarie is the Campaign Assistant and Volunteer Coordinator at Same but Different and joined the team in October 2020. She has been involved with SbD on a more personal level since early 2016 when her young son Eddie took part in the project ‘Rare Aware’. When the project launched it gave Ilmarie both the courage, and platform, to start talking about the rare journey on which she and her family had found themselves. In hosting the Rarely Heard podcast series Ilmarie wants to help create increased awareness of, and an honest conversation around some of the mental health challenges a rare diagnosis can bring.

  • Rick Thompson

    CEO, Beacon

    Rick has spent time digging at fossils, extracting DNA, and working in museums. He now runs a rare disease charity and is repeatedly amazed by the work of the patient groups he works with.

  • Ceridwen Hughes

    Creative Director, Same but Different

    Ceridwen is the founder and Art Director at Same but Different. She started the organisation in 2015 because of her own experiences of having a son with a rare disease. The aim of focusing on the individual rather than simply the rare disease or disability is something she is passionate about. She has also been an advocate for ensuring people can access support following diagnosis.