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Rare Connection

Rare Connection

By: Joanna
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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.

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Episodes
  • FoxG1 With Patricia from New Jersey in Person in Pennsylvania

    FoxG1 With Patricia from New Jersey in Person in Pennsylvania
    Jul 15 2026

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    FOXG1 doesn't just affect the person living with the diagnosis—it changes an entire family.

    In this special episode of Rare Connection, I travel to Pennsylvania for my first in-person podcast interview with New Jersey advocate, author, and mother Patricia Geurds.

    Patricia shares her daughter Kinsley's journey with FOXG1 syndrome, discussing the realities of hospitalizations, feeding tubes, a Broviac catheter, specialized surgeries, and the challenges of raising a child with a complex rare disease. She also explains how her family's experience inspired one child to become a nurse, another to become an author, and led her own path into advocacy.

    Near the end of the conversation, Patricia opens up about the moment that changed her life. A conversation with her life coach helped her realize that sharing her family's story wasn't complaining—it was honoring both herself and her daughter. That realization transformed her approach to advocacy and helped her rediscover herself.

    We also discuss PulsePoint Respond, a community CPR app, and Noom Vibes, a wellness app that encourages healthy habits and self-care.

    Whether you're a caregiver, healthcare professional, researcher, advocate, or someone living with a rare disease, this episode is a reminder that sharing your story can create connection, understanding, and hope.

    Topics discussed:

    • What is FOXG1 syndrome?
    • Feeding tubes (G-tube, J-tube, NG tube)
    • Broviac catheters and specialized surgeries
    • Caregiving and hospital life
    • Family resilience
    • Rare disease advocacy
    • Finding your voice through storytelling

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    1 hr and 44 mins
  • EveryCat Health Foundation: The Cat Connection to Long Covid Part 2 With Dr Maggie Placer

    EveryCat Health Foundation: The Cat Connection to Long Covid Part 2 With Dr Maggie Placer
    Jul 4 2026

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    n Part 2 of my conversation with Dr. Maggie Placer from EveryCat Health Foundation, we continue our discussion of the One Health approach and the surprising connections between veterinary and human medicine.

    This episode explores how research that began with treating cats has contributed to a broader understanding of antiviral therapies and why researchers are now studying Remdesivir as a potential treatment for Long COVID in humans. While the research is ongoing, it highlights how collaboration across medical and veterinary fields can accelerate scientific discovery.

    Whether you're interested in rare diseases, infectious diseases, veterinary medicine, or emerging medical research, this conversation offers a fascinating look at how breakthroughs can cross the boundaries between species.

    If you missed Part 1, be sure to listen to the previous episode for the beginning of this conversation.

    Guest: Dr. Maggie Placer, EveryCat Health Foundation

    In this episode:

    • What One Health means in practice
    • How feline antiviral research has informed human medicine
    • Why researchers are investigating antivirals for Long COVID
    • The value of collaboration between veterinary and human healthcare

    Thank you for listening to Rare Connection, where we connect patients, caregivers, clinicians, researchers, and advocates to educate, inspire, and advance awareness of rare diseases and emerging medical discove

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    33 mins
  • EveryCat Health Foundation: The Cat Connection to Long COVID In Humans with Dr Placer

    EveryCat Health Foundation: The Cat Connection to Long COVID In Humans with Dr Placer
    Jun 27 2026

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    Welcome to Season 7 of Rare Connection!

    What can cats teach us about human health?

    In this episode, Joanna Ball welcomes Dr. Maggie Placer of the EveryCat Health Foundation to explore the growing field of One Health, the idea that the health of humans, animals, and our shared environment are deeply connected.

    Dr. Placer begins with a special presentation highlighting the history of the EveryCat Health Foundation, advances in feline research, and how studies of Feline Infectious Peritonitis (FIP) have contributed to our understanding of coronaviruses, including COVID-19. The conversation then continues with an interview covering Dr. Placer's background, the Foundation's mission, and why collaboration between veterinary and human medicine is creating new opportunities for medical discovery.

    Whether you're interested in rare diseases, translational medicine, veterinary science, or emerging research, this episode offers a fascinating look at how discoveries in one species can improve the lives of another.

    In this episode:

    • Dr. Maggie Placer's journey into veterinary medicine
    • The mission of the EveryCat Health Foundation
    • The One Health approach to research
    • Feline Infectious Peritonitis (FIP) and its connection to COVID research
    • How veterinary discoveries can advance human medicine

    Thank you to Dr. Maggie Placer and the EveryCat Health Foundation for joining us to kick off Season 7 of Rare Connection.

    If you enjoy the show, please subscribe, leave a review, and share this episode to help us continue connecting patients, advocates, researchers, clinicians, and industry leaders around the world.

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    1 hr and 6 mins
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