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.

To Find Out More:

Nasha Fitter

https://www.linkedin.com/in/nashafitter/

FOXG1 Research Foundation:

https://www.foxg1research.org/

Citizen Health:

https://www.citizen.health/