This story is part of a series about founders and experts discovered during the Frontiers Health’s event in Berlin (Germany), where innovative healthcare professionals and disruptive entrepreneurs presented their products, services and ideas. Got a story to tell? Let us know! Email us at [email protected].

When Silvia Cerolini’s daughter, Vicky, was diagnosed with a rare genetic disorder that would slowly steal her sight, she refused to accept the quiet cruelty of inevitability. Doctors told her there was no cure. Pharmaceutical models offered no hope. Yet, from that moment, Cerolini began building what many now call a movement—a global, patient-led revolution in how rare diseases are understood, researched, and treated.

Cerolini is the founder and CEO of Eyes on the Future, a nonprofit that has mobilized families across more than 20 countries in pursuit of one goal: to turn the science of hope into the science of cure. What began as one mother’s desperate search for answers has evolved into an influential force in the rare disease ecosystem—raising millions for research, forging direct partnerships with biotech firms, and challenging the healthcare industry’s most entrenched assumptions.

From a Diagnosis to a Movement

The diagnosis came with clinical precision and emotional devastation: RDH12 Inherited Retinal Dystrophy (IRD), a rare genetic mutation that causes progressive blindness in children.

“We were told to go home and prepare for the worst,” Cerolini recalls.

“But we couldn’t just watch the light fade from our daughter’s eyes.”

So she and her family did what few ever imagine doing—they became their own research team. They scoured scientific papers, built online communities, and began connecting with other parents around the world facing the same grim prognosis. From those early connections emerged Eyes on the Future, an organization that embodies both urgency and collaboration.

Today, the nonprofit brings together hundreds of families, scientists, and investors, bound by the belief that those most affected by rare diseases must have a hand in finding their solutions.

Redefining the Role of Patients

Under Cerolini’s leadership, Eyes on the Future has raised more than $6 million and has become far more than a traditional advocacy group. The organization is now co-developing a gene therapy with the biotech company Opus Genetics, placing patients not at the periphery of research—but at its very center.

It’s a model that upends the status quo. In most of medicine, patients wait for innovation to trickle down. Cerolini’s movement demands a seat at the table from the start—co-designing trials, shaping priorities, and ensuring that lived experience drives discovery.

“We are not just fundraising,” she says.

“We are co-creating the cure.”

Breaking Through a Broken System

Cerolini’s advocacy is as much about economics as it is about empathy. She argues that rare disease research is being held hostage by outdated business models that can’t keep pace with science.

“Science is outpacing business models,” she says.

“We have gene-editing tools, AI-driven diagnostics, and potential cures sitting in freezers. But they stay there because the commercial system isn’t built for small populations.”

The numbers bear out her frustration. Collectively, rare diseases affect an estimated 400 million people worldwide—more than some of the most recognized global epidemics—yet fewer than 5 percent of these diseases have an approved treatment.

Cerolini’s message to investors is clear:

“Rare isn’t rare when you look at the total impact. These are children, families, entire futures waiting in the dark.”

Building a Global Network of Hope

Eyes on the Future’s strength lies in its ability to merge storytelling, science, and transparency. As a matter of fact, EU Startup News had the opportunity to witness Silvia deliver an impactful speech at Frontiers Health 2025 in Berlin, highlighted the stories of many children impacted by this rare disease. Consequently, by combining crowdfunding with strategic partnerships and major philanthropic support, the organization has achieved financial credibility that rivals many corporate foundations.

By the end of 2024, it reported raising over £1 million ($1.3 million)—funds channeled directly into clinical trials, laboratory research, and global awareness efforts. The group’s impact has been recognized internationally by Forbes, BBC, EU Startup News and Vanity Fair, among others, highlighting how grassroots innovation can influence policy and accelerate medical discovery.

Silvia Cerolini’s Vision for the Future

Cerolini’s work with Eyes on the Future is only one facet of her broader mission. As Head of Transformation at Sanofi UK and Ireland, she is embedding the principles of patient-centered innovation into one of the world’s largest pharmaceutical companies.

Her vision is unflinching: a future where “no promising drug is left sitting in a freezer”, and where courage, collaboration, and compassion reshape how medicine reaches those who need it most.

What began as a mother’s personal fight against blindness has grown into something much larger—a blueprint for how healthcare might look when the people it serves lead the charge.

Key Takeaways:

• Eyes on the Future, led by Silvia Cerolini, is redefining rare disease advocacy by transforming patients into co-developers of new therapies.
• The organization has united families from over 20 countries and raised more than $6 million to advance gene therapy research.
• Cerolini’s model challenges the economics of traditional healthcare, arguing that innovation must not be dictated solely by market size but by human need.

In a world where cures can be designed faster than they can be delivered, Silvia Cerolini’s story stands as both a challenge and a promise: that the most powerful force in medicine may still be the determination of one mother refusing to let hope go dark.

This article was brought to you by Frontiers Health, which is one of the premier global health innovation events, with a strong focus on digital therapies, breakthrough technologies, healthcare transformation, investments, and ecosystem development. Frontiers Health is hosted and powered by EVERSANA.​

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