From isolation, community: How a rare diagnosis led to a thriving support network
When Ben Muñoz ’07 MBA suffered a brain aneurysm in his late twenties, he found himself navigating not only a complex medical journey but also the deep isolation that comes with having a rare condition, Arteriovenous Malformations (AVM).
Struggling to find others who truly understood his experience, he decided to create what he wished had existed — a support network for patients like him. What started in 2008 as a small online community has since grown into Ben’s Friends, a thriving nonprofit that serves tens of thousands of people living with rare diseases each month.
But how did a simple idea evolve into a powerful patient-to-patient support platform? And what has Ben learned about building a mission-driven organization that continues to change lives? In this conversation, he shares insights on the power of connection, the challenges facing rare disease patients and his thoughts on the future of digital health advocacy.
We sat down with Ben to learn about the lessons he’s learned along his entrepreneurial journey.
Ben’s Friends started in 2008 as a personal support network and has grown over the past 16 years to serve tens of thousands of rare disease patients monthly. What do you think made it resonate so strongly with people?
Reflecting on the journey of Ben’s Friends, it’s humbling to see how a personal quest for support has evolved into a lifeline for thousands of rare disease patients each month. This growth underscores a fundamental human need: connection. When I faced my own health crisis, the isolation was palpable. Discovering others who shared my experience was transformative, providing not just information, but a sense of belonging.
What are some of the challenges faced by those living with a rare disease that might not affect those with a more common disease? How can information and connecting with others help address those challenges?
Living with a rare disease often means navigating uncharted territory. Unlike more common ailments, there’s limited information, fewer specialists, and a scarcity of established support systems. This can lead to feelings of isolation and uncertainty. Connecting with others in similar situations offers more than just shared experiences; it provides practical advice, emotional support, and a reminder that you’re not alone in your journey.
With dozens of volunteer moderators keeping the platform running, what have you learned about building and sustaining an engaged, mission-driven community?
Our community thrives thanks to the dedication of dozens of volunteer moderators. Building and sustaining such an engaged, mission-driven community has taught me the importance of empathy, active listening, and creating a safe space for members to share and support one another. It’s a testament to what can be achieved when individuals unite with a shared purpose.
What’s next for Ben’s Friends? Any expansions or interesting projects on the horizon?
Looking ahead, Ben’s Friends aims to expand our reach, creating more communities for various rare diseases and enhancing our platform to better serve our members. We’re exploring partnerships and technological solutions to provide more personalized support and resources.
What do you see as the biggest opportunities and challenges in patient advocacy and digital health moving forward?
In the broader landscape of patient advocacy and digital health, there’s a significant opportunity to leverage technology to bridge gaps in care and information. However, challenges remain in ensuring accessibility, maintaining patient privacy, and fostering genuine human connections in an increasingly digital world.
If you could give one piece of advice to aspiring entrepreneurs — especially those building mission-driven organizations — what would it be?
To aspiring entrepreneurs, especially those building mission-driven organizations, I offer this advice: stay close to the community you serve. Understand their needs deeply, listen actively, and let their experiences guide your decisions. Success is measured not just in numbers, but in the positive impact you have on individuals’ lives.