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Recent Episodes
S5E15 Achondroplasia: Munira Shamim
Season 5, Episode 18: In conversation with Munira ShamimI am excited to welcome Munira Shamim to the podcast! 🗣️🦓✨→ About Munira: Munira Shamim is the co-founder of Growing Stronger, a nonprofit…
S5E17 Fibrous Dysplasia/McCune-Albright Syndrome: Beatriz Kaori Miyakoshi Lopes
Season 5, Episode 17: In conversation with Beatriz Kaori Miyakoshi LopesI am excited to welcome Beatriz “Bia” Kaori Miyakoshi Lopes to the podcast! 🗣️🦓✨About Bia:Bia Kaori is the first patient…
Mightylicious Gluten Free Cookies, Founder and CEO, Carolyn Haeler
Season 5, Episode 16: In conversation with Carolyn Haeler In this special episode, Carolyn and I have a meaningful and relatable conversation about how we adapted to our dietary restrictions in a…
S5E16 Desmoid Tumor: Brendan James Clark
Season 5, Episode 15: In conversation with Brendan James Clark→ About Brendan: Brendan is a patient who had a Desmoid Tumor. He was diagnosed with a desmoid tumor in his abdomen at the age of 19,…
S5E14 Fibrous Dysplasia/McCune-Albright Syndrome - Camryn Berry
Season 5, Episode 14: In conversation with Camryn Berry→ About Camryn: Camryn Berry is a young adult living with Fibrous Dysplasia/McCune-Albright Syndrome. Through her experiences getting diagnosed…
S5E13 Congenital Hydrocephalus - Clio Lang
Season 5, Episode 13: In Conversation with Clio Lang→ About Clio: Clio Lang, speaker, model and author of “No One’s Daughter” is a brain surgery survivor dedicated to finding a cure for…
S5E15 Congenital Myasthenic Syndrome - Siobhain Carolan
Season 5, Episode 12: In conversation with Siobhain Carolan→ About Siobhain: Siobhain Carolan is a rare disease patient with Congenital Myasthenic syndrome and was misdiagnosed for 10 years. Despite…
S5E12 Healthcare in Rural Communities and ITP/hEDS - Shea Linton
Season 5, Episode 12: In conversation with Shea Linton→ About Shea: She is a patient advocate living with Idiopathic Thrombocytopenic Purpura (ITP) and Hypermobile Ehlers-Danlos Syndrome (hEDS). She…
S5E11 MECP2 Duplication syndrome - Natalia Cordero
Season 5, Episode 11: In conversation with Natalia Cordero→ Who?: Natalia Cordero is a rare disease mom, advocate, and podcast host. She started in Dylan's world, a space for medical families to get…
S5E10 Hypophosphatasia and Crohn’s Disease - Aaron Blocker
Season 5, Episode 10: In conversation with Aaron Blocker → Who?: Aaron Blocker is a rare disease patient, content creator and Executive Director of the Mississippi Rare Disease Advisory Council.He…
S5E9 Deaf British Asian Multi-Award-Winning Entrepreneur - Shezad Nawab MBE
Season 5, Episode 9: In conversation with Shezad Nawab MBEMeet Shezad – a trailblazing Deaf entrepreneur, business strategist, and international speaker with over two decades of experience in…
S5E8 Conradi-Hünermann syndrome - Lauren Schoeller
Season 5, Episode 8: In Conversation with Lauren Schoeller→ Who?: Lauren Schoeller grew up in a small New Hampshire town, attending the University of New Hampshire for undergrad. She completed her…
S5E7 Fibrodysplasia Ossificans Progressiva (FOP) - Erin Danzer
Season 5, Episode 7: In Conversation with Erin Danzer→ Who?: Erin Danzer is a 26 year old and is in the process of transferring to Cal-state to pursue her bachelor’s in Communications. She loves to…
S5E6 Chromosome 18q-proximal deletion - Sydney Alper
Season 5, Episode 6: In Conversation with Sydney Alper→ Who?: Sydney Alper, a best buddies ambassador and an advocate for people with disabilities.→ Rare Disease Connection: Sydney has as a rare…
S5E5 Rare Disease Week Special: Laura Romano - Program Manager Young Adult Rare Representatives
Season 5, Episode 5: In Conversation with Laura RomanoRare Disease Week Special Episode!!! → Who?: Laura Romano, Program Manager for @hearusyarr and a rare disease patient. → Rare Disease Connection:…
S5E4 Occult Tethered Cord Syndrome & Syringomyelia - Bailey Miller
Season 5, Episode 4: In conversation with Bailey Miller.→ Who?: Bailey Miller, a rare disease patient, a young adult rare representative→ Rare Disease Connection: Bailey is a patient living with…
S5E3 Hypermobile Ehlers-Danlos Syndrome & Periodic Limb Movement Disorder - Ken Sullivan
Season 5, Episode 3: In conversation with Ken Sullivan → Who?: Ken Sullivan, a rare disease, patient and advocate. → Rare Disease Connection: Ken patient living with Hypermobile Ehlers-Danlos…
S5E2 Rare Patient Voice - Wes Michael
Season 5, Episode 2: In conversation with Wes Michael → Who?: Wes Michael, the President and Founder of Rare Patient Voice → Rare Disease Connection: Wes Michael founded Rare Patient Voice in 2013…
Ehlers-Danlos syndrome, Mast Cell Activation and Gastroparesis - Carter Hemion
Season 5, Episode 1: In Conversation with Carter Hemion → Who?: Carter Hemion, a trailblazing advocate in the rare disease, disability and immunocompromised spaces. → Rare Disease Connection: Carter…
S4E11 Stiff Person Syndrome - Madison Bowe
Season 4, Episode 11: In conversation with Madison Bowe. Who?: Madison Bowe, an incredible patient advocate. Rare Disease Connection: Madison is an individual living Stiff Person Syndrome. She is…
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1 of 20 Podcast has published 54 episodes since February 2021, covering topics in Health & Fitness, Medicine.
1 of 20 Podcast is currently sporadic with new episodes every 2 weeks. Average episode length is 41m.
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