Season 2: Talking in tandem
We are doing things a little differently this time around.
Join us every fortnight as we release two episodes, one featuring a person living with a rare disease and the other someone working professionally in the disease area. Talking in tandem, is a chance for you to hear a wider range of stories and perspectives from across the rare community.
You can listen now on Spotify, Apple, Google, Amazon, Overcast and Stitcher.
S2, E12. Alkaptonuria: The value of working closely to empower patients
S2, E11. Alkaptonuria: One man’s rare disease journey from Ukraine to the UK
S2, E10. Neurofibromatosis Type 1: There is no health without mental health
S2, E9. Neurofibromatosis Type 1: Benign does not mean fine
S2, E8. Primary Ciliary Dyskinesia: The power of partnerships in PCD and across the rare community
S2, E7. Primary Ciliary Dyskinesia: Coordination of care, cultural considerations and finding community
S2, E6. Alport Syndrome and rare kidney diseases: Developing with the community and being involved as a clinician
S2, E5. Alport Syndrome: When your life changes overnight, finding hope, taking action and giving support
S2, E4. Huntington’s Disease: The role of the genetic counsellor, helping people to make the choices that are right for them
S2, E3. Huntington’s Disease: Hard choices, pursuing motherhood and seeing the good side
S2, E2. Poland Syndrome: Surgeons as supporters: ‘much more than just fixing a problem with a scalpel’
S2, E1. Poland Syndrome: Bodies and boobs from adolescence to advocacy
S1, E8. Huntington’s disease: Family, uncertainty and living life to the full
Ashley talks about grappling with her identity as a potential carrier of Huntington’s disease (HD) and how HD has impacted her family, career and outlook on life.
S1, E7. West Syndrome: Fatherhood, advocacy and men’s mental health
Matt Hughes talks with honesty and clarity about the way in which his own mental health has been impacted by his son Charlie’s rare, and devastating form of epilepsy.
S1, E6. Life as a young carer: identity, perceptions and looking after yourself
Connor talks about identity and the challenges of asking for help as a young carer for his partner Simon.
S1, E5. PCDH19 Epilepsy: Motherhood and the journey towards finding hope and healing
Hannah Deacon talks about her incredible campaign to access medical cannabis on the NHS for her son Alfie.
S1, E4. Lyme disease: Stigma, identity and finding joy
Morven-May talks about being diagnosed with Lyme Disease as a teenager and how it continues to shape her identity and outlook a decade later.
S1, E3. Spina Bifida: Fatherhood, mental health, and the importance of inclusion
Dan White’s world changed forever when his daughter Emily was born. Dan talks candidly about their lives with multiple diagnoses, their early struggles, and how campaigning and advocating for inclusion for all has become central to their lives.
S1, E2. Hunter Syndrome: Motherhood, grief and loss
Geraldine Renton’s world changed forever in 2020, when her son Ethan passed away due to Hunter Syndrome.
S1, E1. Duchenne Muscular Dystrophy: Motherhood, acceptance and finding happiness
Shelley Simmonds’s life was forever changed by the birth of her second child, Fraser, who was diagnosed with a rare, genetic, disabling and progressive life-limiting condition called Duchenne muscular dystrophy in February 2014.