Rarely Heard
By Beacon
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Image by Beacon
Category: Mental Health
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Episodes: 20
Description
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.
| Episode | Date |
|---|---|
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S2, E12. Alkaptonuria: The value of working closely to empower patients
|
May 24, 2023 |
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S2, E11. Alkaptonuria: One man’s rare disease journey from Ukraine to the UK
|
May 24, 2023 |
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S2, E10. Neurofibromatosis Type 1: There is no health without mental health
|
Apr 12, 2023 |
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S2, E9. Neurofibromatosis Type 1: Benign does not mean fine
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Apr 11, 2023 |
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S2, E8. Primary Ciliary Dyskinesia: The power of partnerships in PCD and across the rare community
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Mar 23, 2023 |
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S2, E7. Primary Ciliary Dyskinesia: Coordination of care, cultural considerations and finding community
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Mar 23, 2023 |
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S2, E6. Alport Syndrome and rare kidney diseases: Developing with the community and being involved as a clinician
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Mar 22, 2023 |
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S2, E5. Alport Syndrome: When your life changes overnight, finding hope, taking action and giving support
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Mar 22, 2023 |
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S2, E4. Huntington’s Disease: The role of the genetic counsellor, helping people to make the choices that are right for them
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Feb 22, 2023 |
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S2, E3. Huntington’s Disease: Hard choices, pursuing motherhood and seeing the good side
|
Feb 22, 2023 |
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S2, E2. Poland Syndrome: Surgeons as supporters: ‘much more than just fixing a problem with a scalpel’
|
Feb 07, 2023 |
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S2, E1. Poland Syndrome: Bodies and boobs from adolescence to advocacy
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Feb 07, 2023 |
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S1, E8. Huntington’s disease: Family, uncertainty and living life to the full
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Feb 16, 2022 |
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S1, E7. West Syndrome: Fatherhood, advocacy and men’s mental health
|
Feb 02, 2022 |
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S1, E6. Life as a young carer: identity, perceptions and looking after yourself
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Jan 19, 2022 |
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S1, E5. PCDH19 Epilepsy: Motherhood and the journey towards finding hope and healing
|
Jan 05, 2022 |
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S1, E4. Lyme disease: Stigma, identity and finding joy
|
Dec 15, 2021 |
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S1, E3. Spina Bifida: Fatherhood, mental health, and the importance of inclusion
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Dec 08, 2021 |
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S1, E2. Hunter Syndrome: Motherhood, grief and loss
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Dec 03, 2021 |
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S1, E1. Duchenne Muscular Dystrophy: Motherhood, acceptance and finding happiness
|
Dec 02, 2021 |