Rare Connection

About Rare Connection

Rare Connection is a podcast dedicated to rare diseases, undiagnosed conditions, patient advocacy, medical research, and the people working to improve the lives of those living with rare disorders. Originally launched as Nutrition Equity, the podcast expanded into Rare Connection to reflect its broader mission: sharing the stories, science, and research behind all 10,000+ known rare diseases—not just those related to the Medical Nutrition Equity Act. Each episode features conversations with patients, caregivers, physicians, researchers, nonprofit leaders, advocates, and biotechnology experts. Together, we explore rare diseases, genetic disorders, newborn screening, clinical trials, emerging treatments, healthcare policy, diagnostic journeys, and the challenges of living with conditions that are often misunderstood. In medicine, common conditions are often referred to as "horses," while rare diseases are known as "zebras." Although each rare disease affects relatively few people, more than 300 million people worldwide live with a rare disease. Collectively, rare diseases impact more people than many realize, yet they are frequently underdiagnosed, misdiagnosed, or diagnosed only after years of searching for answers. I host this podcast not only as an advocate, but also as someone living with Homocystinuria (HCU), a rare inherited metabolic disorder. I understand firsthand how isolating a rare diagnosis can be and how important education, research, and community are for patients and families. Whether you are a patient, caregiver, healthcare professional, researcher, policymaker, student, or simply curious about rare diseases, Rare Connection aims to educate, inspire, and connect people through real conversations and expert insights. Video episodes are available on YouTube through Rare_Chef, with audio available on all major podcast platforms. If you have a rare disease, undiagnosed condition, or work in rare disease research, advocacy, or healthcare and would like to be a guest, I'd love to hear from you. Please contact me at joanna.ball41@gmail.com (mailto:joanna.ball41@gmail.com). Rare Connection is more than a podcast—it's a growing community. Beyond sharing educational interviews, I help connect patients and families with rare disease organizations, Facebook support groups, advocacy groups, clinical trial information, researchers, and others who may be able to provide support or answer questions. Sometimes the most important step is simply helping someone realize they are not alone.

Publisher

Joanna

Category

business · education · health & fitness

Language

en

Explicit

No

First episode

17 Jun 2023

Latest episode

19 Oct 2026

Latest episodes

93 episodes in the feed.

1. 

   19 Oct 2026

   Living With Myasthenia Gravis: Tracking Symptoms Between Visits | Camden Hill, California

   Send us Fan Mail Your symptoms don’t stop when a doctor’s appointment ends. But how do you explain everything that happened between visits? In this episode of Rare Connection, Joanna Ball welcomes Camden Hill from California, founder of Areluno Health. Diagnosed with myasthenia gravis in 2017, Camden shares how his experiences navigating healthcare inspired him to help patients document their daily health and communicate more clearly with providers. We explore life with myasthenia gravis, the...

2. 

   13 Oct 2026

   Homocystinuria & Neurofibromatosis 1 With joseph From The UK

   Send us Fan Mail What happens when signs of a second rare condition are dismissed because a child already has one diagnosis? For HCU Awareness Month, Joanna Ball welcomes Joseph, a father from the United Kingdom, to share the story of his 14-year-old son, Mathew. The youngest of five children, Mathew is nonverbal and lives with Classical Homocystinuria (HCU) and neurofibromatosis type 1 (NF1). Concerns about missed developmental milestones eventually led to a metabolic specialist and Mathew’s...

3. 

   25 Sept 2026

   Rare Patient Voice with Wes Michael President & Founder

   Send us Fan Mail In this episode, Joanna speaks with Wes Michael, President and Founder of Rare Patient Voice, a market‑research industry veteran with over 40 years of experience. Wes shares how his unique background — from an MBA at the University of Chicago Booth School of Business to a BA in English from the University of Pennsylvania — shaped his mission to build a patient‑driven research panel that puts privacy, trust, accessibility, and respect at the center. Wes explains how Rare Patie...

Who has been a guest on Rare Connection

Names identified in recent episode analyses. Showing up to five guests.

• Dr Maggie Placer
• Maggie Placer
• Marguerite AW Gorter-Stam
• Dr Marc Hedrick
• Adebola Giwa

Reach and audience

Public platform figures. Ratings count people who left a rating, not total listeners.

YouTube views

137,840

Score snapshot 15 Sept 2025

Apple Podcasts (US)

5.0 / 5

2 ratings

Spotify

5.0 / 5

17 ratings

Podcast Authority Score: 64 / 100

A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.

Quality

67

Social presence

0

YouTube

82

Engagement

71