Rare Connection

Joanna

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 dis

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Episodes

90 episodes

  1. HCU & NF1: Mathew’s Story... 1:12:59
  2. Narcolepsy With Heather from Maine 1:18:03
  3. Ank 3 With Tami from Kansas 32:00