https://www.rarelyheard.org/rarely-heard-all-episodes daily 0.75 2025-12-05 https://www.rarelyheard.org/rarely-heard-all-episodes/reaching-underrepresented-communities-nz9cg monthly 0.5 2025-12-08 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/5d5c51e2-61f7-4d5b-841b-aa9710582d24/Podcast+Cover+Image.png All episodes - S3, E3. Connecting voices - challenge and opportunity in patient group-industry collaborations. - Welcome to Episode 3 of Season 3 of Rarely Heard. In this episode, we explore how new and orphan medicines are developed in the UK, shedding light on both the opportunities and the challenges along the way, including: the commercial realities, the personal stakes for patients urgently seeking treatment, and the broader system that shapes these journeys. Today, we examine the complex relationships between patient organisations and the pharmaceutical industry - unpacking what it means to collaborate, advocate, and push for progress from both sides of the table. Please listen below! https://www.rarelyheard.org/rarely-heard-all-episodes/reaching-underrepresented-communities monthly 0.5 2025-12-05 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/5d5c51e2-61f7-4d5b-841b-aa9710582d24/Podcast+Cover+Image.png All episodes - S3, E2. Reaching underrepresented communities in rare disease care. - Welcome to Episode 2 of Season 3 of Rarely Heard. In this episode, we’re delving into the world of equity and inclusion in rare diseases, and the people leading the way to make care and research more representative for everyone affected. From tackling barriers to access, to exploring how charities and research can work better with underrepresented groups, this episode opens an important conversation about representation and what inclusion really looks like in practice. Please listen below! https://www.rarelyheard.org/rarely-heard-all-episodes/clare-soulsby-and-helen-bygott-a7apr monthly 0.5 2025-12-05 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/5d5c51e2-61f7-4d5b-841b-aa9710582d24/Podcast+Cover+Image.png All episodes - S3, E1. The importance of specialist services for patients and families. - Welcome to Season 3 of Rarely Heard. In today’s episode, we’re diving into the world of Specialist Services - clinics that provide expert, coordinated care for people and families living with rare or complex conditions. These services play a vital role, not only for those directly affected but also for the wider healthcare system. We’ll be exploring the innovations, challenges, and collaboration models that shape these services, and the impact they have on patients, families, and healthcare as a whole. This episode features a diverse group of voices, from patient advocates and researchers to clinicians, all working together to ensure that everyone affected receives the best possible care. Please listen below! https://www.rarelyheard.org/rarely-heard-all-episodes/clare-soulsby-and-helen-bygott monthly 0.5 2025-10-21 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/206a07d7-71d0-45e7-b23c-e76a8aa3401e/AKU+logo.png All episodes - S2, E12. Alkaptonuria: The value of working closely to empower patients - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/kostiantyn-bidnenko monthly 0.5 2024-02-15 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/206a07d7-71d0-45e7-b23c-e76a8aa3401e/AKU+logo.png All episodes - S2, E11. Alkaptonuria: One man’s rare disease journey from Ukraine to the UK - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/nf1-stephanie-yin monthly 0.5 2024-02-15 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/73b94e8b-6cba-4fc6-be83-bf3b5c79dd1f/RareMinds+logo.png All episodes - S2, E10. Neurofibromatosis Type 1: There is no health without mental health - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/nf1-shelly-nicole monthly 0.5 2024-02-15 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/bbe65407-3dd6-4f06-a8ee-4c4db4e6d44d/476BB4B5-5CDF-4F71-AE74-F844E952EF37.png All episodes - S2, E9. Neurofibromatosis Type 1: Benign does not mean fine - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/1406d071-f8ef-4f8a-b0b3-76290d2aab23/5796CB21-315A-4B3E-A8A7-A0083A70DF86_1_105_c.jpeg All episodes - S2, E9. Neurofibromatosis Type 1: Benign does not mean fine - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/a89ba83b-fef6-4e62-bb6d-3f2dac802701/logo.png All episodes - S2, E9. Neurofibromatosis Type 1: Benign does not mean fine - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/clare-gibbons-y3395-z9dht monthly 0.5 2024-02-15 https://www.rarelyheard.org/rarely-heard-all-episodes/abdullah-ihsan-primary-ciliary-dyskinesia monthly 0.5 2024-02-15 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/acb833ec-1d77-4535-bb81-bc13dbec5842/6F90826C-9E83-4A5B-9558-6FC60A2A1434_1_102_o+%281%29.jpeg All episodes - S2, E7. Primary Ciliary Dyskinesia: Coordination of care, cultural considerations and finding community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/7129235c-d4fd-4e9c-a7f1-0a0cdfb866a3/thumbnail_PCD_Support_UK_LOGO-WHITE-BCKG.jpg All episodes - S2, E7. Primary Ciliary Dyskinesia: Coordination of care, cultural considerations and finding community - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/matt-hall-alport-syndrome monthly 0.5 2024-02-15 https://www.rarelyheard.org/rarely-heard-all-episodes/kevin-schnurr-alport-syndrome monthly 0.5 2024-02-15 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/58ae35ab-396c-4ea4-8781-9a82cb7c4d91/Alport-Syndrome-Foundation.png All episodes - S2, E5. Alport Syndrome: When your life changes overnight, finding hope, taking action and giving support - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/9b7db1c5-4564-4301-8d30-7cc108fe204d/IMG_0795+%281%29.PNG All episodes - S2, E5. Alport Syndrome: When your life changes overnight, finding hope, taking action and giving support - Make it stand out Illustration by, Maryna Kolochavina, PharmD, PhD, PMP. Director of the Five Voices Consortium, Ltd. https://www.rarelyheard.org/rarely-heard-all-episodes/clare-gibbons monthly 0.5 2024-02-14 https://www.rarelyheard.org/rarely-heard-all-episodes/erin-paterson-hd monthly 0.5 2024-02-14 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/7b6fe7c8-cf08-4acc-9eb6-94a57f8c74a5/emma+and+erin.jfif All episodes - S2, E3. Huntington’s Disease: Hard choices, pursuing motherhood and seeing the good side - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/00e383c5-59cf-41f6-92a6-f1e7987ab7b3/Erins+book.png All episodes - S2, E3. Huntington’s Disease: Hard choices, pursuing motherhood and seeing the good side - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/rebecca-butcher-poland-syndrome-5nf6b monthly 0.5 2024-02-14 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/89246c29-ff38-49dc-bb46-32e3f375dee1/PIP-UK+Logo+-+Support+and+Network+%282%29.png All episodes - S2, E2. Poland Syndrome: Surgeons as supporters: ‘much more than just fixing a problem with a scalpel’ - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/rebecca-butcher-poland-syndrome monthly 0.5 2024-02-14 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/89246c29-ff38-49dc-bb46-32e3f375dee1/PIP-UK+Logo+-+Support+and+Network+%282%29.png All episodes - S2, E1. Poland Syndrome: Bodies and boobs from adolescence to advocacy - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/rarely-heard-all-episodes/ashley-clarke monthly 0.5 2023-02-17 https://www.rarelyheard.org/rarely-heard-all-episodes/matt-hughes monthly 0.5 2023-02-17 https://www.rarelyheard.org/rarely-heard-all-episodes/connor-hughes monthly 0.5 2023-02-17 https://www.rarelyheard.org/rarely-heard-all-episodes/hannah-deacon monthly 0.5 2023-02-17 https://www.rarelyheard.org/rarely-heard-all-episodes/morven-may monthly 0.5 2023-02-17 https://www.rarelyheard.org/rarely-heard-all-episodes/dan-white monthly 0.5 2023-02-17 https://www.rarelyheard.org/rarely-heard-all-episodes/geraldine-renton monthly 0.5 2023-02-17 https://www.rarelyheard.org/rarely-heard-all-episodes/shelley-simmonds monthly 0.5 2023-02-17 https://www.rarelyheard.org/home daily 1.0 2025-10-27 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/79578984-20bf-4762-9c1b-3c461023db6e/Beacon+logo+SQSP.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/017aa077-a2eb-45b6-84ee-c10ac1e324d0/sbd+3000+x+1000.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/d587dd09-c46a-4146-bf43-0445f3e798cb/2.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/c09420d4-fc1b-412a-809a-bd61a440cf4d/3.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/e5c32d95-169c-4ae1-9fff-32f4dcf0b3bd/4.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/f053a92b-1636-425e-826c-a7244ecad16f/1.png Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.rarelyheard.org/listen-now daily 0.75 2025-10-27 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/b37cc7f2-4919-466d-929c-2bf170672779/Listen+on+amazon+and+audible.png Listen now https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/4c01be82-c83e-4efa-bfc3-373fe9d081ad/Listen+on+Apple+.png Listen now https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/07601b40-9094-4e08-9706-b3d285a7008c/Listen+on+stitcher.png Listen now https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/dd432b1c-05d8-486d-bfd0-18727ff4231c/Listen+overcast.png Listen now - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/63c7d85a-de66-428f-bd24-075a1b14a01a/Listen+on+Spotify.png Listen now https://www.rarelyheard.org/season-two-illustrations daily 0.75 2025-10-27 https://images.squarespace-cdn.com/content/v1/613f6e0892bbec38f40090c3/2eb83fae-e08a-4be7-90f4-57dae47202ab/Rarely+Heard_LinkedIn+1+%282400+%C3%97+1400px%29.png