Rare Connection
Joanna
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Recent Episodes
S6E12 Can Targeted Radiation Change the Future of Brain Cancer? | Dr. Marc Hedrick | Plus Therapeutics
Send us Fan MailIn this episode of Rare Connection, host Joanna Ball speaks with Dr. Marc Hedrick, President and CEO of Plus Therapeutics, about emerging technologies aimed at improving outcomes for…
S6E11 McCune Albright Syndrome With Dr. Giwa From Atossa Therapeutics
Send us Fan MailWhat happens when one rare condition affects the bones, skin, hormones, and development—but looks completely different in every patient?“In this episode of Rare Connection, Joanna is…
S6E10 Friedreich's Ataxia With Alexis From Tennessee
Send us Fan MailWhat does it really take to maintain independence when your body is changing?For people living with rare diseases, that question becomes part of everyday life—navigating changes in…
S6E9 Adrenoleukodystrophy With Elisa From New York
Send us Fan MailElisa's son, Aidan, was born healthy—but by first grade, he began losing his vision. He was later diagnosed with adrenoleukodystrophy (ALD), a rare genetic condition that progresses…
S6E8 26 Year Stomach Cancer Survivor Healing with Food with Chef Chuck
Send us Fan MailWhat does life look like decades after a rare cancer diagnosis—and how does food play a role in that journey?In this episode of Rare Connection, Joanna sits down with Chuck Hayworth,…
S6E7 Denovo (Genetic But Not Inhereited) With Jenny From Texas
Send us Fan MailWhat if two of your children were diagnosed with two completely different rare genetic conditions… on the same day?In this episode of Rare Connection, I speak with Jenny, a mother of…
S6E6 New Drug For Duchenne Muscular Dystrophy With Dr. Steven Quay
Send us Fan MailIn this episode of Rare Connection, I’m joined by physician-scientist and biotech CEO Dr. Steven Quay to discuss an emerging approach to treating Duchenne muscular dystrophy—and how…
S6E5 Schizencephaly with Glen from California
Send us Fan MailWhat is it like to live with multiple rare brain malformations and severe epilepsy?In this episode of Rare Connection, Joanna speaks with Glenn Schallman, who has been diagnosed with…
S6E4 Atypical Hemolytic Uremic Syndrome With Taylor From California
Send us Fan MailThis 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 us Fan MailThis 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 us Fan MailIn 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 us Fan MailIss 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…
S5E13 Dyscalculia With Michelle From Pensylvania
Send us Fan MailIn 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 us Fan MailIn 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 us Fan MailIn 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…
S5E10 NEDAMSS With Liz From Florida
Send us Fan MailIn 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…
S5E9 Global Drug Access For Rare Diseases With Aayush Goyal of MedsPartner
Send us Fan MailImagine 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 us Fan MailWhat’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…
S5E7 TNRC6B With Keyundra From Arkansas
Send us Fan MailIn 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…
S5E6 Idiopathic Intercranial Hypertnsion with Stephanie From Maryland
Send us Fan MailIn 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…
Frequently Asked Questions
Rare Connection has published 77 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 48m.
Sign up on Grep.FM to access contact details for Rare Connection, including email and social media links.
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