By Stacey Wasserman
Chief Business Officer

Today, on the rarest day of the year, February 29 — Medisafe stands alongside the global community in celebrating Rare Disease Day. It’s a day that holds profound significance, serving as a beacon of hope and unity for the millions worldwide who navigate the complexities of rare diseases every day.

Rare Disease Day isn’t just about raising awareness; it’s about amplifying the voices of our heroes—the individuals, families, caregivers, and advocates—who demonstrate unwavering resilience, self-advocacy, and hope in the face of extraordinary challenges. It’s about turning grief into purpose and reminding us that love isn’t rare; it’s a powerful force that binds us together in solidarity and compassion.

With over 300 million people worldwide living with a rare disease, and at least 7000 different conditions identified, the need for equitable access to diagnosis, treatment, and care has never been more critical. It’s a staggering statistic—one that underscores the urgency of our collective efforts to ensure that no one is left behind.

At Medisafe, we’ve had the privilege of supporting individuals managing rare diseases through our platform. With over 12M users relying on Medisafe to navigate their treatment regimens, we understand the profound impact that effective medication management can have on improving quality of life. 

With the overwhelming fear and uncertainty that accompany diagnosis, we’ve supported the struggles of managing multiple medications, juggling doctor appointments, and grappling with the financial burden of treatment. But amidst the chaos, we’ve also seen the transformative power of support and solidarity.

That’s why Medisafe is more than just a medication management tool; it’s a lifeline for those navigating the complex landscape of rare diseases. Our integrated, personalized approach empowers patients and caregivers alike to chart a better course throughout the treatment journey. From streamlined medication management, to access to support programs and copay assistance, Medisafe is committed to simplifying the process and putting control back in the hands of those who need it most.

But our work doesn’t stop there. We recognize that advocacy and collaboration are essential in driving meaningful change. That’s why we’re proud to stand alongside rare disease organizations like Adrenal Insufficiency United in their tireless efforts to raise awareness, promote research, and advocate for policy changes that prioritize the needs of those affected by rare diseases. Medisafe has over 4k users grappling with adrenal deficiency, relying on the platform to meticulously orchestrate their treatment regimens. Remarkably, 25% of these individuals manage an astounding 11 or more medications through Medisafe’s innovative support system.

According to a recent patient survey conducted in February 2024 using the Medisafe app, a significant majority of users receiving treatment for adrenal deficiency expressed a critical need for medication reminders, citing frequent lapses in dosage adherence. Among the myriad of obstacles encountered in their healthcare journey, users highlighted communication hurdles with healthcare providers, the detrimental effects of health issues on their careers, mounting mental health concerns, and the burden of treatment expenses as the most pressing challenges.

Factors Contributing to Patient Non-Adherence

Navigating the Complexities of Rare Disease Management

Rare disease impacts the lives of 1 in 10 Americans. When patients unite with resilience, their collective strength transcends mere statistics, echoing far beyond numbers to leave a permanent  impact. Each individual story is a testament to the resilience of the human spirit and the power of community. As we come together to celebrate Rare Disease Day, let us honor the heroes among us and reaffirm our commitment to building a world where equitable access to diagnosis, treatment, and care is not just a goal but a reality for all.