Episodes 69
Avg. Duration 47m
Activity Highly Active
Since Jun 2023
Latest Episode Feb 2026

Publishing Details

Schedule
Every 2 Weeks
Format
Episodic
Consistency
37%
Hosting
feeds.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

S6E4 Atypical Hemolytic Uremic Syndrome With Taylor From California

Feb 28, 2026 53m

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

Feb 19, 2026 2h 5m

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

Feb 10, 2026 55m

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

Dec 20, 2025 37m

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

Dec 03, 2025 34m

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

Oct 11, 2025 31m

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

Sep 29, 2025 30m

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

Aug 09, 2025 38m

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

Aug 08, 2025 37m

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

Jul 31, 2025 41m

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

Jul 20, 2025 59m

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

Jul 17, 2025 46m

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

Jun 29, 2025 54m

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

Jun 24, 2025 49m

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

Jun 18, 2025 1h 18m

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

Jun 07, 2025 32m

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

Jun 04, 2025 49m

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

May 29, 2025 53m

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

May 14, 2025 1h 36m

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

May 05, 2025 40m

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

How many episodes does Rare Connection have?

Rare Connection has published 69 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 47m.

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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