In this episode of The Clinical Research Coach, host Leanne Woehlke sits down with trailblazer Nasha Fitter—tech entrepreneur, rare disease advocate, and co-founder of both the FOXG1 Research Foundation and Citizen Health.
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.
What began as a grassroots foundation now drives innovative drug development, redefines data collection, and challenges the status quo in drug development.
In this conversation, Nasha shares:
How a small, determined parent community raised $10M and launched a gene therapy program
Why traditional research models fail rare disease patients—and how to fix them
The power of patient-owned data and how platforms like Citizen Health are transforming access and insights
How to build empathy for families navigating special needs
What pharma gets wrong (and right) in working with advocacy groups
Her vision for a precision medicine future—starting with ultra-rare
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.
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