Inside the Texas Heart Studio

Fibromuscular Dysplasia: How Social Media Is Changing the Landscape of Rare Diseases


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On this episode of Inside the Texas Heart Studio, Dr. Stephanie Coulter sits down with Dr. Jeffrey Olin to discuss, "Fibromuscular Dysplasia: The Rare Disease That Isn’t."

This episode explores how social media has transformed the way patients with rare diseases, like fibromuscular dysplasia, find specialists and connect with others facing similar challenges. Dr. Jeffrey Olin, is the Director of Vascular Medicine and the Vascular Diagnostic Laboratory at the Icahn School of Medicine at Mount Sinai.

Dr. Olin discusses:

  • His journey into researching fibromuscular dysplasia, a rare vascular disease.
  • The importance of curiosity and perseverance in medical practice.
  • The power of social media in raising awareness and empowering patients.
  • How social media has transformed patient referrals for uncommon diseases.
  • The need for responsible social media use by medical professionals.
  • The broader impact of research on fibromuscular dysplasia on understanding other women's health issues.

For more information on the FMD Registry visit texasheart.org/fmd

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Inside the Texas Heart StudioBy The Texas Heart Institute