Applying Marketing to Rare Disease & Biotechnology
My career has spanned fintech, urban development, startups, sustainability, and retail—leading marketing and communications efforts that drive growth, shape positioning, and bring complex ideas to market. More recently, that focus has shifted toward rare disease, biotechnology, and genetics.
I have two children with a rare genetic condition called Epidermolysis Bullosa (EB), a disorder caused by missing or defective proteins that are essential for holding skin and tissue together. While the disease exists on a wide spectrum, even milder forms require ongoing clinical management and significantly impact quality of life.
Like many families, I had never heard of EB before my daughter was diagnosed.
What I've learned is that while rare disease is uncommon, it is not rare to know someone with a rare disease. More than 300 million people worldwide are living with a rare disease. There are over 6,000 identified rare diseases, and approximately 70–80% are genetic in origin. Yet an estimated 95% of rare diseases still have no approved treatment.
What followed was a deep immersion into an entirely new ecosystem: clinical research, patient advocacy, nonprofit networks, and biotechnology companies working to develop therapies. Over time, that immersion evolved into a clear point of view on the space—and where I can contribute.
I’ve spent the last several years engaging with biotech startups, researchers, and patient communities to better understand not only the science, but the structural challenges that slow progress: fragmented data, limited patient populations, complex trial design, and the gap between innovation and patient access.
To deepen that understanding, I am currently completing Harvard’s Biotechnology Management program.
What has become clear is that the future of rare disease treatment will be shaped not just by scientific breakthroughs, but by how effectively we connect data, patients, and therapies.
Advances in AI and genetic analysis are making it possible to better understand genotype-phenotype relationships, identify genetic modifiers, and match patients to therapies with greater precision. There is also significant opportunity to repurpose existing therapies and improve clinical trial design—reducing friction, accelerating enrollment, and increasing the likelihood of success in a system where many trials fail before reaching patients.
This intersection—between complex science, patient experience, and market adoption—is where my background is most relevant: translating technical ideas into clear, compelling narratives that drive awareness, adoption, and action.
In biotechnology, that means helping companies communicate value to investors, partners, regulators, and—critically—patients and caregivers. It also means elevating the patient voice as a strategic asset—informing research, trial design, and how therapies are brought to market.
In rare disease, many of the challenges are not just scientific—they’re also about awareness, positioning, and connection. Small, fragmented patient populations make it harder to identify, reach, and engage the right audiences, while complex science can create barriers to understanding across stakeholders.
Marketing and communications play a critical role in closing that gap—helping translate complexity, build trust, and ensure that innovation reaches the people it’s intended to serve.
That perspective is what led me to begin writing about rare disease, including a monthly column with BioNews. The goal is not just to share personal experience, but to help bridge the gap between lived experience and the broader biotech ecosystem—bringing more visibility, clarity, and urgency to the space.
It’s work I plan to continue.
