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Recent Episodes
S6E4 Atypical Hemolytic Uremic Syndrome With Taylor From California
Send a textThis Rare Disease Awareness Month, I’m honored to share the extraordinary survival story of writer, performer, and patient advocate Taylor Coffman.After giving birth to her daughter,…
S6E3 Spinal Muscular Atrophy With Candis From California
Send a textThis episode features Candace, who lives with spinal muscular atrophy (SMA), a rare genetic and progressive neuromuscular condition. Diagnosed at 18 months, she shared her early…
S6E2 Accelerated Global Clinical Trial With Julio Martinez- Clark
Send a textIn honor of Rare Disease Awareness Month, this episode of Rare Connection explores one of the most urgent topics facing the rare and ultra-rare community: global access to clinical…
S6E1 New Drug for RDEB Skin Condition With Professor Mark Lowdell From The UK
Send a textIss rare disease journeImagine waking up every day knowing even a light touch could cause your skin to tear or blister. That’s the reality for children and adults living with Recessive…
S5E13 Dyscalculia With Michelle From Pensylvania
Send a textIn this episode of Rare Connection, Joanna sits down with writer, photographer, paraeducator, and disability advocate Michelle Steiner to talk about life with dyscalculia, an…
S5E12 Partial Trisomy 8Q Duplication Syndrome Wuth Saida From California
Send a textIn this powerful episode of Rare Connection, Joanna Ball speaks with Saida Mahoney — a beauty queen, author of nine books, athlete, performing artist, and National Rare Disease and…
S5E11 Okur Chung Neuro Developmental Syndrome (OCNDS) With Jillian from Massachusetts
Send a textIn this episode of Rare Connection, I talk with Jillian Kavanagh, a nurse practitioner and parent to Ellie, who was diagnosed with Okur-Chung Neurodevelopmental Syndrome (OCNDS) at age 4.…
S5E10 NEDAMSS With Liz From Florida
Send a textIn this episode of Rare Connection, Joanna speaks with Liz, mother of Stephanie, about the ultra-rare IRF2BPL genetic disorder—also known as NEDAMSS—and the groundbreaking milestone of the…
S5E9 Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner
Send a textImagine discovering that a life-saving treatment for your rare condition exists — but you can’t get it because it’s not available or affordable in your country. That’s the reality for…
S5E8 Palliative care with Anne Front LMFT from California
Send a textWhat’s the difference between palliative care and hospice? Why is palliative care still misunderstood—and how can it support people with cancer, rare diseases, and other serious conditions…
S5E7 TNRC6B With Keyundra From Arkansas
Send a textIn this powerful episode of Rare Connection, host Joanna Ball sits down with special needs mom and author Keyundra, who shares the emotional and medical journey of her son Zaire — a child…
S5E6 Idiopathic Intercranial Hypertnsion with Stephanie From Maryland
Send a textIn this episode of Rare Connection, host Joanna speaks with Stephanie from the EveryLife Foundation for Rare Diseases, who shares her journey living with Idiopathic Intracranial…
S5E5 CLCN6 With Paul From California
Send a textIn this powerful episode of Rare Connection, we meet Paul, the president of Cure CLCN6 and the father of Paxton, a young boy diagnosed with an ultra-rare visit mutation on the CLCN6…
S5E4 Sarcoidosis With Regina From Indiana
Send a textIn this episode of Rare Connection, host Joanna speaks with Regina, a sarcoidosis patient, author, and creative advocate who’s transforming her personal health journey into a source of…
S5E3 Glutaric Acidemia 1 with Serena From New Zealand 2nd Anniversary episode
Send a textIn this special Rare Connection Live episode, host Joannal celebrates 2 years of amplifying rare voices by welcoming Serena, a rare disease advocate and parent from New Zealand.Serena’s…
S5E2 Ank 3 With Tami from Kansas
Send a textIn this episode of Rare Connection, host Joanna sits down with Tami — a teacher, advocate, and mother of 7-year-old Jonathan, who lives with a rare ANK3-related disorder. Tami shares her…
S5E1 Mental Health and Rare Disase with Frank From New York
Send a text🧠 Mental health is rarely optional when you're living with a rare disease. Join Joanna, host of Rare Connection, for a powerful live conversation with Frank, a rare disease patient and…
Orphan Disease of HLA-B27 With Brenda From Florida
Send a textIn this episode, I sit down with Brenda, a woman navigating the challenges of a painful, disabling, and unnamed orphan disease. Despite testing negative for VEXAS, relapsing…
S4E12 Neuromyoitis Optica with Nicki From New York
Send a textIn this episode of Rare Connection, host Joanna Ball speaks with [Guest Name], who shares their powerful journey with [Rare Disease]. Together, they discuss diagnosis challenges, treatment…
S4E11 Familial Adenomatous Polyposis With Jenny From Oklahoma
Send a textIn this milestone 50th episode of Rare Connection, host Joanna sits down with Jenny, the powerful voice behind the blog Life’s A Polyp. Diagnosed with Familial Adenomatous Polyposis (FAP)…
Frequently Asked Questions
Rare Connection has published 69 episodes since June 2023, covering topics in Education, Government.
Rare Connection is currently highly active with new episodes every 2 weeks. Average episode length is 47m.
Sign up on Grep.FM to access contact details for Rare Connection, including email and social media links.
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