Marc Coronel shared their story and experiences with us recently and you can find our conversation below.
Marc , really appreciate you sharing your stories and insights with us. The world would have so much more understanding and empathy if we all were a bit more open about our stories and how they have helped shaped our journey and worldview. Let’s jump in with a fun one: Have any recent moments made you laugh or feel proud?
Absolutely, one moment that made me especially proud was seeing both the City of Los Angeles and the State of California officially recognize FSGS Awareness Month. As the advocate who spearheaded this effort, it was incredibly rewarding to see the power of advocacy and community action translate into official recognition. Moments like this remind me that raising awareness, building community, and speaking up for those with rare kidney diseases can create real, lasting change.”
Can you briefly introduce yourself and share what makes you or your brand unique?
I’m Marc Coronel, TEDx Speaker, Author, Healthcare Consultant, and Rare Disease Advocate. I dedicate my work to empowering patients with rare kidney diseases and chronic conditions, helping them navigate complex healthcare journeys, share their stories, and turn awareness into action.
I’ve taken my message to a TEDx stage, inspiring audiences about the power of advocacy and personal storytelling. I’ve also guided patients to secure living kidney donations through community and social media campaigns, and worked directly with congressional leaders to advance legislation improving the lives of those with rare kidney diseases.
What drives me is seeing how storytelling, advocacy, and community action can create real change, whether it’s inspiring an audience, connecting patients to donors, or shaping policies that impact thousands of lives.
Thanks for sharing that. Would love to go back in time and hear about how your past might have impacted who you are today. What breaks the bonds between people—and what restores them?
I’ve seen firsthand that the bonds between people are often broken by fear, misunderstanding, and the silence that comes with unmet needs. In healthcare, especially around chronic illness, families, friends, and communities can feel helpless or disconnected because they don’t know how to help, or they don’t fully understand the challenges someone is facing. That gap creates distance, frustration, and even isolation.
What restores bonds, I’ve found, is communication, empathy, and shared purpose. When someone opens up about their experience and others listen without judgment, connections deepen. Advocacy is one of the most powerful ways to restore those bonds, bringing people together around a cause, giving them ways to act, and transforming empathy into tangible support. I’ve seen friendships, communities, and even strangers come together to find living kidney donors or support awareness campaigns, and it’s in those moments of shared action and understanding that relationships are strengthened and hope is restored.”
Was there ever a time you almost gave up?
There have been many moments along this journey, navigating the healthcare system, advocating for patients, and trying to raise awareness for rare kidney diseases, when the challenges felt overwhelming. I remember times when it seemed like no one was listening, when progress was slow, or when the stakes felt impossibly high. It would have been easy to step back and let the frustration take over.
What kept me going was remembering why I started and who I was doing it for. Every patient I met, every story shared, and every small victory reminded me that persistence matters. I realized that giving up didn’t just stop me, it would silence the voices of the people I was advocating for. So I leaned into community, drew strength from the stories of others, and kept showing up, one step at a time. Those moments of doubt became fuel for action, and what once felt insurmountable turned into meaningful progress.
So a lot of these questions go deep, but if you are open to it, we’ve got a few more questions that we’d love to get your take on. What’s a belief or project you’re committed to, no matter how long it takes?
I’m deeply committed to the belief that patients deserve to be seen, heard, and included as partners in their care and in the systems that shape healthcare policy. Real change doesn’t happen overnight, especially when you’re working in rare disease spaces where awareness is limited and progress can feel slow. But I’m committed for the long haul to building bridges between patients, providers, policymakers, and communities.
Whether it’s advancing awareness, shaping legislation, or helping people find their voice through storytelling, I believe lasting impact comes from consistency and trust. Even when progress feels incremental, I’ve seen how sustained advocacy can shift conversations, influence decisions, and ultimately improve lives. That belief, that persistence paired with purpose can move systems, is what keeps me showing up, no matter how long it takes.
Okay, we’ve made it essentially to the end. One last question before you go. What do you understand deeply that most people don’t?
I understand how quickly life can change when you’re forced to navigate systems you never expected to enter and how isolating that can feel. Through my own journey in healthcare and advocacy, I’ve learned that the hardest part isn’t just the diagnosis or the obstacles, it’s realizing how invisible you can become inside systems that weren’t built with rare conditions in mind.
I also understand how powerful it is when someone finally feels seen and supported. I’ve witnessed how sharing a story clearly, honestly, and without fear can open doors to community, resources, and even life-saving opportunities. Most people don’t realize that advocacy often starts from a place of survival and grows into purpose. Once you experience that transformation, you stop seeing challenges as individual struggles and start seeing them as calls to build something better for everyone who comes after.
Contact Info:
- Instagram: kidney_Fighter
- Linkedin: https://www.linkedin.com/in/marc-a-coronel-43a41b64/
