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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Эпизоды

92 эпизода

  1. Sanfilippo Syndrome with Chelsea from Michigan 56:19
  2. HCU & NF1: Mathew’s Story... 1:12:59
  3. Narcolepsy With Heather from Maine 1:18:03
  4. Undiagnosed With Christine from Pennsylvania 1:00:04
  5. Friedreich's Ataxia With Alexis From Tennessee 43:19
  6. Adrenoleukodystrophy With Elisa From New York 29:42
  7. Schizencephaly with Glen from California 33:48
  8. Spinal Muscular Atrophy With Candis From California 2:05:53
  9. Dyscalculia With Michelle From Pensylvania 34:09
  10. NEDAMSS With Liz From Florida 38:26
  11. TNRC6B With Keyundra From Arkansas 59:12
  12. CLCN6 With Paul From California 54:40
  13. Sarcoidosis With Regina From Indiana 49:32
  14. Ank 3 With Tami from Kansas 32:00
  15. Neuromyoitis Optica with Nicki From New York 1:36:49
  16. Sjogren's Syndrome with Mimi From Florida 1:24:05