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“Pharma Is Not Coming” — Patient Groups Are Now Drug Developers | Sunitha Malepati & Craig Lipset

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Sunitha Malepati is the Founder and CEO of the Buffalo Initiative. An attorney by background, she entered the rare disease world after her daughter was diagnosed with a CACNA1A-related disorder just before her third birthday. The doctor told them: “Go home and love your kid. There’s nothing we can do.” She refused to accept that answer.

Craig Lipset is a clinical innovation leader with 20+ years transforming drug development. Former Head of Clinical Innovation at Pfizer. Co-Founder and Co-Chair of the Decentralized Trials & Research Alliance (DTRA). Now serves as Clinical Leader for the Buffalo Initiative.

In Today’s Episode We Discuss:

  • “Go Home and Love Your Kid” — What One Doctor Said After Diagnosis
  • Why Pharma Can’t Solve Ultra-Rare Diseases
  • 7,000 Rare Conditions with No Treatments
  • The Buffalo Initiative: Patient-Led Drug Development
  • “Lemonade Stands and Bake Sales” — How Patient Groups Fund Trials
  • Bundling and Blending: A New Finance Model for Rare Disease
  • California’s $5B Bet on Regenerative Medicine
  • Patient Groups Finding Families Globally
  • “This IS an Investable Proposition”
  • Pioneering Parents: John Crowley, Julia Vitiello, Terry Piro Velazquez
  • From Storytellers to Strategic Partners
  • Advice for Biotechs, Patients, and Pharma

Resources:

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