Redefining Rare Disease Care Through the Sanofi 1RARE Model

Content sponsored and created by Sanofi

Healthcare systems are navigating unprecedented demands, especially in rare disease, where existing resources often struggle to keep pace with real-time clinical needs and the ongoing shift toward value-based care.

In this conversation, Duane Clark, General Manager, Rare Disease at Sanofi, and Robert Hopkin, MD, Clinical Geneticist at Cincinnati Children’s Hospital Medical Center, discuss how the field is changing and how the Sanofi 1RARE model has grown to help meet these changes.

Duane: Dr. Hopkin, you have worked with patients and families navigating rare diseases for decades. How has the landscape evolved since you began your career, and what challenges remain in providing coordinated, comprehensive care?

Dr. Hopkin: When I began practicing as a geneticist nearly 30 years ago, sequencing a single gene cost thousands of dollars, so testing was narrow and selective. Now we can sequence thousands of genes, or even an entire genome, for roughly the same cost.¹ That progress has transformed our ability to diagnose diseases earlier and with much greater precision.

Even with these advances, we still face major challenges in diagnosing rare diseases in a timely manner. Rare disease symptoms often resemble a range of common conditions spanning disease specialty areas, and patients can spend years seeing multiple specialists before getting an answer, which takes a real toll on them both mentally and physically.

These challenges can continue even after diagnosis, as there is still a need for continued education and improved communication across specialties, often with patients and families left to navigate this complex system alone, leading to conflicting advice, scheduling burdens, and immense frustration. What we need most is better connection between people, data, and systems to create a truly coordinated experience.

Dr. Hopkin: Given those persistent challenges in rare disease care, how has Sanofi responded to address these gaps, especially as health systems transition to value-based care?

Duane: You’ve highlighted one of the biggest problems in rare disease, which is that these challenges and barriers exist at every step of the patient’s health journey, further delaying diagnosis and treatment.

At Sanofi, we recognize that addressing these challenges requires a solutions-oriented approach. That thinking led to the creation of the Sanofi 1RARE model, which focuses on health systems, clinicians, and patient advocates to deliver rare solutions at scale and ensure they are accessible and effective.

We also recognize that access to care remains a persistent challenge. That is why we work with the EveryLife Foundation for Rare Diseases and other partners to advance newborn screening policies and promote health equity through advocacy and collaboration. These efforts directly support health systems in their transition to value-based care by increasing diagnostic efficiency, improving outcomes, and enhancing the patient experience.

Duane: You’re known for leading coordinated, multidisciplinary care efforts in rare disease. What strategies have helped your team address these challenges, and what lessons can other health systems take away?

Dr. Hopkin: Collaboration is central to everything we do. Our team of genetic counselors and advanced practice nurses review each patient’s most recent updates across specialties before I meet with them. That preparation allows us to focus on clinical decision-making rather than administrative details and significantly reduces the time families spend managing logistics.

We also prioritize continuity of care. Many of my patients stay under my care from childhood through adulthood, which helps prevent gaps during transitions. Continuity is especially important in rare diseases, where specialized expertise can be difficult to find in adult care settings.

Listening to families has also shaped our approach. In Fabry disease, for example, our understanding evolved after hearing from women and families who noticed similar symptoms in their children. Those insights helped redefine how we view and treat the condition.

I am also a firm believer that true innovation is not always about technology. It often comes from building trust, improving communication, and keeping care centered on the patient experience.

Dr. Hopkin: Even with strong internal systems, coordination across departments can be difficult. How does the Sanofi 1RARE model help bridge those gaps?

Duane: The Sanofi 1RARE model was designed to strengthen collaboration across the entire care ecosystem. It integrates educational resources designed to support improved testing for patients that present with relevant symptoms, ultimately leading to faster diagnosis. This educational information aims to equip primary care teams to identify at-risk patients, offer geneticists clearer diagnostic insights, and allow specialists to collaborate on treatment planning in real time.

Beyond its technology, the Sanofi 1RARE model fosters stronger communication and education across care teams so that everyone is aligned on diagnostic and treatment pathways. By helping to create a common language across primary care, genetics, and specialty services, we help reduce friction and improve shared decision-making.

The model also provides education about patient care transitions, for example from childhood to adulthood, to ensure that individuals are connected to the right specialists at the right time. This proactive approach helps minimize delays, strengthen coordination, and supports more connected care delivery.

A good example is our partnership with Fairview Health System, where we are piloting data-driven programs to enhance clinician education in order to better identify at-risk patients. It demonstrates how a solutions-focused model can drive measurable, system-level impact and create a more connected future for rare disease care.

Dr. Hopkin: Looking ahead, where do you see the greatest opportunities for collaboration between industry and health systems?

Duane: The future lies in co-creation. Health systems bring deep clinical and operational knowledge, and industry brings data, technology, and scale. When those strengths combine, we can create programs that are both clinically meaningful and sustainable.

Specifically, we see tremendous potential in three key areas: data-sharing partnerships—in compliance with all privacy laws and regulations—that help contextualize real-world outcomes and care gaps, team-based pilot models that connect our specialists with health system teams with the goal of improving rare disease diagnosis, and new co-creation opportunities to build scalable digital tools like electronic health record (EHR) decision support guides and care management systems with both parties contributing expertise to get it right for patients.

Through the Sanofi 1RARE model, we are building shared frameworks for defining success, measuring outcomes, and refining approaches together.

Connecting Partnerships, Capabilities, and Care at Scale

Through stronger partnerships, expanded capabilities, optimized care pathways, and educational resources, the Sanofi 1RARE model is helping health systems deliver rare disease care more efficiently and sustainably, driving better outcomes across the patient journey.

To learn more about how the Sanofi 1RARE model is advancing rare disease care in collaboration with providers across the country, please visit the 1RARE website to learn more.

References:

1. National Human Genome Research Institute. (2023, October 26). The cost of sequencing a human genome. National Institutes of Health. Retrieved from https://www.genome.gov/about-genomics/fact-sheets/Sequencing-Human-Genome-cost. Accessed December 2025.

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