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Orphan Disease Research: Overcoming Years of Industrywide Neglect

You are here: Home / Archive / Feature Stories / Orphan Disease Research: Overcoming Years of Industrywide Neglect
Published: July 3, 2022 by RHJ Producer

Doctors diagnosed Patrick Girondi’s son with thalassemia in 1992, declaring he’d die by age 14. Like most other rare conditions, treatments for thalassemia were slim to none. Dr. Stanley Nelson explains how orphan disease research has progressed in the last few decades and why a cure isn’t always the goal.


Guest Information:

  • Dr. Stanley Nelson, Professor of Human Genetics, UCLA, Director of the California Center for Rare Diseases, UCLA
  • Patrick Girondi, author of Flight of the Rondone, Founder, San Rocco Therapeutics

Links for more info:

  • PatGirondi.com
  • Pat G And Orphan’s Dream – Facebook Page
  • Flight of the Rondone – Skyhorse Publishing
  • Stanley F. Nelson – David Geffen School of Medicine – Los Angeles, CA
  • California Center for Rare Diseases at UCLA
Program #: 22-27Segment Type: Feature StoriesTopics: Business and Industry| Consumerism| Diagnoses| Experimental Treatments| Health Care| Pharmaceutical Industry| Pharmacology and Toxicology| Public Health| Rare Diseases and Conditions| Research and Clinical Trials| Research Funding| Undiagnosed and Mystery Illness| Vulnerable PopulationsMedical Conditions: ThalassemiaGuests: Dr. Stanley Nelson| Patrick GirondiPublications: Flight of the RondoneInstitutions & Organizations: California Center for Rare Diseases| San Rocco Therapeutics| University of California, Los Angeles (UCLA)Host: Reed PenceProducers: Jason Dickey| Kristen Farrah
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Previous Post:How Just One Night in a Hospital Can Cause Years of Trauma
Next Post:Medical Notes: July 10, 2022

About RHJ Producer

Since 1992, Radio Health Journal has been bringing listeners useful, verifiable information they can trust and rely on in the fields of medicine, science & technology, research, and the intersection of health & public policy. Both Radio Health Journal and sister show Viewpoints Radio are AURN productions.

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