Interview With Nasha Fitter, Co-Founder and CBO of Citizen Health and Co-Founder and CEO of FOXG1 Research Foundation

In this Founder spotlight edition, we introduce Nasha Fitter, Co-Founder and CEO of FOXG1 Research Foundation and the Co-Founder and Chief Business Officer at Citizen Health.

Nasha Fitter is deeply passionate about supporting children and families affected by FOXG1 syndrome. Nasha’s commitment to this cause is not just professional but deeply personal, driving her to create a world where every affected individual can access the resources and research they need. At the White House Rare Disease Forum, she spoke about the need for changes to support the 30 million patients living with a rare disease, including 15 million children in the United States.

Nasha played a pivotal role in expanding Citizen’s strategic partnerships and initiatives, enhancing its impact in the healthcare sector, and contributing innovative solutions that address critical needs in health and wellness. Citizen aims to build a comprehensive knowledge base of patient health journeys to help patients and accelerate drug development.

With a vision rooted in compassion and innovation, Nasha Fitter continues to inspire change and hope for those navigating the challenges of rare diseases. Check out Nasha Fitter’s exclusive interview with Eqvista..

Welcome to the founder spotlight interview, Nasha! First of all, thank you so much for your vital contribution to advancing research and supporting families coping with rare diseases. 

As a co-founder of Citizen Health, what are the primary goals you aim to achieve with the platform?

Thank you so much for having me! My journey into healthcare began when my youngest daughter was diagnosed with a severe rare disease—one with no cure and very little information available. That experience was life-changing and showed me just how much support families like mine truly need. At Citizen, our mission is to bridge those gaps. We aim to provide families with immediate access to the guidance they need throughout their health journey, while also helping pharmaceutical companies accelerate the development of life-changing drugs. It’s all about making the process faster, more accessible, and more impactful for everyone involved.

How does Citizen Health empower patients to take control of their health data, and what feedback have you received from users about this experience?

The first step to advocating for yourself as a patient or caregiver is having quick, seamless access to all your medical records—not just what’s available in your MyChart portal. You need everything, from clinical notes to imaging, to make informed decisions, get second opinions, or contribute to research. At Citizen, we take on the heavy lifting by reaching out to every medical institution a patient has visited—big or small—to gather their complete medical history. Once collected, all those records are securely available to the patient in their personal portal. This is especially important since, on average, patients on our platform see about six different providers. Having everything in one place is a game-changer.

The feedback we’ve received has been incredible. Patients in ERs now have instant access to their records to share with doctors when every second counts. Cancer patients are empowered to get second and even third opinions with ease. Some patients have discovered critical information in their records that their physicians never shared. And military families, who are always on the move, finally have a single place to access all their healthcare history. These stories remind us why we do what we do, and they keep us motivated to keep improving.

Congratulations on recently securing seed funding of $14.5M! In your opinion, what are the most significant funding barriers that rare disease organizations face?

Thank you! We’re incredibly grateful to have the support of investors who believe in our mission. Funding for rare disease research has definitely seen its ups and downs over the years. But in my opinion, we’re standing at the edge of a major wave of technological innovation in medicine—one like we’ve never seen before. On both the diagnosis and treatment sides, things are evolving rapidly. We’re heading toward a future where diagnoses happen very early, and genetic therapies are available to address issues almost immediately. A world where every disease is treated like a rare disease, with fully personalized care.

The biggest challenge, however, isn’t the technology—it’s the systems around it. Our regulatory, clinical, and payment structures were built for an era of “one-size-fits-all” medicine, designed to serve the masses. Changing these deeply ingrained human systems is far more complex than advancing technology itself. That’s where many rare disease organizations face their toughest hurdles: the market and infrastructure simply haven’t caught up to the pace of innovation yet. But I truly believe this is a temporary challenge, and in the near future, we’ll see these barriers start to fall.

What are some of the challenges you’ve encountered while advocating for funding and support for rare disease research? What are your key strategies for securing funding for rare disease research?

On the for-profit side, the biggest challenges we’ve faced are tied to the overall volatility of the market. When the biotech industry contracted, many companies either shut down their rare disease programs or closed entirely. These market swings are fairly normal, and I don’t see this as a long-term issue. In fact, we’re already seeing renewed interest and investment in rare disease research, which is encouraging.

Nonprofit funding is a bigger challenge. Most donations go to causes personally affecting donors, which means larger diseases attract the majority of philanthropy. With over 10,000 rare diseases, the funding for these conditions gets fragmented—leaving each disease to rely heavily on small groups of affected families to raise funds. It’s incredibly difficult to sustain meaningful research with such limited resources.

Government support is also limited, with rare disease programs underfunded at both state and federal levels. I spend considerable time advocating for better policies and support.

At Citizen, we secure funding by building strong relationships with aligned investors, partnering with organizations to amplify our mission, and staying focused on delivering results. It’s a collective effort, and the progress we’re making keeps us optimistic.

You recently spoke at the White House Rare Disease Forum. What key messages did you want to convey regarding the role of patient advocacy groups in drug development?

In addition to my work at Citizen, I co-founded and lead the FOXG1 Research Foundation, an advocacy group dedicated to finding a cure for the rare condition my daughter suffers from. Through this work, I’ve seen firsthand how outdated systems fail to keep up with the rapid progress in diagnosis and treatment. While patient advocacy groups are driving breakthroughs faster than traditional institutions, NIH funding still primarily supports academia.

At the White House Rare Disease Forum, my key message was this: patient advocacy groups, despite leading critical efforts like preclinical research and advancing therapeutic development, have no access to government grants. It’s time to rethink and modernize our systems so they align with the new reality of how innovation is happening—driven by patient-led initiatives.

We‘re excited to hear about the developments and innovative approaches your foundation is taking to advance research for FOXG1 syndrome?

I love this question! At the FOXG1 Research Foundation, we’re incredibly proud of what we’ve achieved. When we started, we learned it could take $150 million and 20 years to develop a treatment for FOXG1 syndrome—neither of which we had. So, we reimagined every stage of drug development to make it faster and more affordable, creating a “Blueprint for Rare Disease Drug Development.” We’ve cut the cost to $22 million and the timeline to 12 years. And we’re proving it’s possible. In under seven years, starting from having no understanding of our disease, we’ve developed a gene replacement therapy we hope to take to clinical trials next year.

Data has been a major part of our success. Building a robust registry of natural history data is critical to accelerating every stage of drug development, from preclinical research to Phase 4 trials. This focus on collecting patient data in more innovative ways is what led to the creation of Citizen, which I co-founded with Farid Vij. Utilizing the Citizen platform, our foundation has been able to create a FOXG1 dataset that’s driving our clinical trial design and helping us advocate for accelerated FDA approval. Citizen also enable long-term follow-up without burdening families by collecting medical records instead of requiring clinic visits.

Traditional drug development doesn’t fit rare diseases. We’ve focused on crafting a strategy that works, and we’re proving it’s possible to innovate for rare conditions.

What strategies do you believe are essential for fostering collaboration between patient advocacy groups, researchers, and pharmaceutical companies?

In rare diseases, collaboration between patient advocacy groups, researchers, and pharmaceutical companies is absolutely essential for developing effective treatments. This is at the core of Citizen’s mission. We work closely with advocacy groups to build robust registries and capture the natural history of patient symptoms. These datasets are then shared with researchers to publish natural history studies and with pharmaceutical companies to accelerate drug development and design trials with meaningful endpoints. Without all three groups working together and sharing information, developing effective, disease-modifying drugs simply isn’t possible.

Looking ahead, what changes would you like to see in the healthcare system regarding support for families affected by rare diseases? What advice would you give to parents who are just beginning their journey with a rare disease diagnosis?

I’m optimistic about the future for rare disease families. Technologies like cell and gene therapies are advancing rapidly, diagnoses are improving with affordable genetic testing, and patients are demanding to be treated as informed healthcare consumers. I hope these shifts drive meaningful change, including:

• More funding for platforms like Citizen to unify fragmented patient data and build communities.
• Tools for physicians to access and contribute to better rare disease insights.
• Increased government funding for patient-driven drug development.
• Expanded incentives like Priority Review Vouchers, especially for ultra-rare diseases, to attract capital.
• Faster, rare-disease-specific approval processes at the FDA.

I have so much advice for parents just starting this journey! I think if I had to pick the most critical, just remember you are your child’s best advocate. You don’t need to be a doctor or scientist—just do your research and know you can make an impact. Parent-led foundations are achieving incredible milestones. But most importantly, pace yourself. This is a marathon, not a sprint. Take care of yourself, because what your child needs most is a healthy, happy parent.

How do you maintain balance between your roles as a caregiver, advocate, and leader in the healthcare space?

I used to aim for a “work-life blend,” but I found it caused a lot of anxiety because I couldn’t be fully present for anyone. Now, I focus on maintaining clear boundaries. When I’m with my children, I try not to check my phone or let emails distract me. Unless it’s critical, I let work know that this is family time. Similarly, when I’m working, I communicate to my family that I need uninterrupted time—I’ll even lock my office door if needed!

I also prioritize focus in each role. During advocacy meetings, I don’t let work tasks distract me until the meeting is over. And when it’s time to exercise, I honor that commitment to myself, even if there are unanswered emails waiting. I’ve learned that trying to please everyone is impossible, and it’s okay if someone is upset now and then.

Most importantly, I try to do my best each day and give myself grace on the days when I fall short. I don’t aim for perfection, I aim for impact. And as I’ve gotten older I’ve learned to be more intentional and kinder to myself along the way.

What advice would you give to emerging leaders in healthcare who aspire to make a difference in their communities?

The most important thing is to build a strong team. You cannot have impact alone. To do that, you need to have a clear vision and real love for the people you want to help. If you’re working to create change in your community, start by understanding what will inspire others to join your cause and support your mission. The rest—creating and executing a strategy—can only succeed with the right people by your side. Surround yourself with individuals who share your vision, will complement your strengths, have the ability to push back and have debates with you, and together, you can drive real change.