Episodes 77
Avg. Duration 48m
Activity Highly Active
Apple Rating 5.0 (2)
Since Jun 2023
Latest Episode Jun 2026

Publishing Details

Schedule
Every 2 Weeks
Format
Episodic
Consistency
27%
Hosting
rss.buzzsprout.com

Contact & Outreach

About This Podcast

Formerly  Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act.   Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories.  Rare conditions are called zebras hence the zebra striped ribbon.  More common conditions are called horses.  Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture.  Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime.  As someone with a rare condition myself (Homocystinuria or HCU),  know that having a rare condition can be very lonely.  Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death.  If you are interested in talking and feel comfortable on camera please contact me at [email protected].  I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

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Recent Episodes

S6E12 Can Targeted Radiation Change the Future of Brain Cancer? | Dr. Marc Hedrick | Plus Therapeutics

Jun 04, 2026 1h 39m

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

May 09, 2026 1h 6m

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

Apr 22, 2026 43m

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

Apr 14, 2026 29m

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

Apr 08, 2026 1h 50m

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

Mar 23, 2026 52m

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

Mar 19, 2026 1h 13m

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

Mar 12, 2026 33m

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

Feb 28, 2026 53m

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

Feb 19, 2026 2h 5m

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

Feb 10, 2026 55m

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

Dec 20, 2025 37m

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

Dec 03, 2025 34m

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

Oct 11, 2025 31m

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

Sep 29, 2025 30m

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

Aug 09, 2025 38m

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

Aug 08, 2025 37m

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

Jul 31, 2025 41m

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

Jul 20, 2025 59m

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

Jul 17, 2025 46m

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

How many episodes does Rare Connection have?

Rare Connection has published 77 episodes since June 2023, covering topics in Education, Government.

Is Rare Connection still active?

Rare Connection is currently highly active with new episodes every 2 weeks. Average episode length is 48m.

How do I contact Rare Connection for sponsorship or guest appearances?

Sign up on Grep.FM to access contact details for Rare Connection, including email and social media links.

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