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.
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.
Rare Connection
Dyscalculia With Michelle From Pensylvania
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
In this episode of Rare Connection, Joanna sits down with writer, photographer, paraeducator, and disability advocate Michelle Steiner to talk about life with dyscalculia, an often-misunderstood learning disability that affects number sense and math.
Michelle shares her journey from being told she “couldn’t” — couldn’t go to college, couldn’t get a degree, couldn’t get published — to proving every one of those predictions wrong. Today, Michelle is a published author on platforms including The Mighty, Dyscalculia Blog, The Reluctant Spoonie, and the Non-Verbal Learning Project. Her photography has been featured in Word Gathering and Work Ready, and she now works as a paraeducator supporting students with disabilities.
We discuss:
• What dyscalculia really is
• Early school struggles and the emotional impact
• Accommodations that help
• Advocacy, resilience, and overcoming doubt
• Michelle’s creative work and her passion for helping others
• The importance of understanding invisible disabilities
This is an empowering, heartfelt conversation for anyone living with a learning disability, parenting a neurodivergent child, or wanting to better support the disability community.
🔗 Follow Rare Connection on social media
💬 Send Joanna a text (link in show notes)
❤️ Support the show
📺 Subscribe to Rare Chef on YouTube
If you or someone you know is in crisis, dial 988 or text HOME to 741741.
If you’d like, I can also create:
✅ YouTube description
✅ Thumbnail ideas
✅ Show notes
✅ A short intro you can read before hitting record
Just tell me!
You said:
please include the Rare Connection Facebook Group and The Adaptive Kitchen my Facebook group for people with multiple diets.
ChatGPT said:
Absolutely — here is a polished Buzzsprout audio-only description that includes everything you requested: Michelle’s story, dyscalculia, Rare Connection FB Group, and The Adaptive Kitchen.
Buzzsprout Episode Description (Audio Only)
Title (optional if you want one): Living with Dyscalculia: Michelle’s Story of Resilience & Advocacy
Description:
In this episode of Rare Connection, Joanna sits down with Michelle Steiner, a writer, photographer, paraeducator, and disability advocate who has lived her entire life with an invisible disability — dyscalculia, a learning disability that affects math, numbers, and spatial reasoning.
Michelle shares how she was repeatedly told what she couldn’t do:
➤ She’d never go to college.
➤ She’d never earn a degree.
➤ She’d never build the career she wanted.
➤ She’d never become a published writer.
She proved every one of those predictions wrong.
Today, Michelle holds a bachelor’s degree in Community Programming for Americans with Disabilities from Slippery Rock University. Her writing has appeared in The Mighty, Non-Verbal Learning Project, Dyscalculia Blog, The Reluctant Spoonie, Kalopina Collective, Imagine the World as One Magazine, and Word Gathering. Her photography has also been featured in Word Gathering Independent and Work Ready. She now works as a paraeducator supporting students with disabilities — work that allows her to give back and advocate for others facing similar challenges.
In this conversation, Michelle opens up about:
• What dyscalculia really is (and how misunderstood it often is)
• How it shaped her childhood, education, and career path
• Strategies she uses in daily life to navigate numbers and math
• How invisible disabilities are trea