Rarely Heard: All Episodes
S3, E4. Shifting sands: the evolving world of rare disease policy
S3, E3. Connecting voices - challenge and opportunity in patient group-industry collaborations.
S3, E2. Reaching underrepresented communities in rare disease care.
S3, E1. The importance of specialist services for patients and families.
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.