Disrupting Drug Development – Nasha Fitter’s Mission to Transform Rare Disease Research

<p>In this episode of <em>The Clinical Research Coach</em>, host Leanne Woehlke sits down with trailblazer <strong>Nasha Fitter</strong>—tech entrepreneur, rare disease advocate, and co-founder of both the <strong>FOXG1 Research Foundation</strong> and <strong>Citizen Health</strong>.</p><p><br></p><p>After Nasha’s daughter was diagnosed with FOXG1 syndrome, an ultra-rare neurological disorder, her world shifted. Instead of accepting the limitations of the current research landscape, she took action- building a foundation, galvanizing the scientific community, and redefining what’s possible for families facing rare disease.</p><p><br></p><p>What began as a grassroots foundation now drives innovative drug development, redefines data collection, and challenges the status quo in drug development.</p><p><br></p><p><strong>In this conversation, Nasha shares:</strong></p><ul><li>How a small, determined parent community raised $10M and launched a gene therapy program</li><li>Why traditional research models fail rare disease patients—and how to fix them</li><li>The power of patient-owned data and how platforms like Citizen Health are transforming access and insights</li><li>How to build empathy for families navigating special needs</li><li>What pharma gets wrong (and right) in working with advocacy groups</li><li>Her vision for a precision medicine future—starting with ultra-rare</li></ul><p>This is a story about courage, creativity, and a more inclusive, patient-driven future of medicine. Nasha’s bold vision and action oriented approach will leave you inspired and hopeful.</p><p><br></p><p><strong>To Find Out More:</strong></p><p>Nasha Fitter</p><p>https://www.linkedin.com/in/nashafitter/</p><p>FOXG1 Research Foundation: </p><p>https://www.foxg1research.org/</p><p>Citizen Health:</p><p>https://www.citizen.health/</p><p><br></p><p><br></p><p><br></p>