From Silence to Service: Practicing Rare Disease Advocacy

I didn’t set out to become an advocate. I set out to just survive.

Living with a rare disease means learning to navigate uncertainty, isolation, and a constantly shifting definition of what “normal” looks like. For years I held my story close, unsure whether it mattered or whether sharing it would help anyone else. Then one day, someone reached out and simply said, “Me, too.”

That changed everything!

In that moment, I learned something powerful: Our stories don’t have to be dramatic to be meaningful. They just have to be shared.

The many hats of rare disease advocacy

Advocacy isn’t one-size-fits-all. For me, it’s a blend of speaking, mentoring, and writing—each with its own purpose and reach.

As a speaker, I’ve stood on stages, and appeared on Zoom screens, sharing my journey with medical professionals, support groups, and policy leaders. I speak not merely to educate or inform, but to humanize—to remind people that behind every diagnosis is a person with dreams, fears, and resilience.

As a mentor, I walk alongside others who are newly diagnosed and feeling lost. Sometimes it’s a phone call. Sometimes it’s a quiet message that says, “You’re not alone.” Mentorship isn’t about having all the answers. It’s about showing up with empathy and lived wisdom that can only come from lived experiences.

As a writer, I craft articles that blend vulnerability with advocacy. I write to process, to educate, to connect, and to encourage. Whether it’s a blog post, a social media thread, or a downloadable resource, my words are bridges built from my own journey.

Behind the scenes of advocacy

Advocacy may look polished from the outside, but behind the scenes, it’s deeply personal work.

Preparing for events means more than rehearsing a speech. It means deciding how much of your truth to share, how to pace your energy (a daily consideration), and how to hold space for others while protecting your own emotional bandwidth.

Writing articles starts with a spark—an experience, a question, a moment that won’t let go. I outline, revise, and sometimes walk away before coming back with fresh eyes. I ask: “Who needs to hear this?” and “How can I make it easier for them to feel seen?”

Mentoring others is quiet, steady work. It’s checking in, listening deeply, and offering encouragement without pressure. It’s knowing when to speak and when to simply be present.

Turning pain into purpose

Advocacy doesn’t erase pain, but it gives it direction. It transforms suffering into service.

I’ve seen firsthand how sharing my story has helped others find courage, clarity, and connection. I’ve watched caregivers breathe easier, patients feel less alone, and professionals rethink how they approach care. These moments remind me that purpose isn’t found in perfection. It’s found in presence.

Your voice matters, too

Living with a rare disease can feel isolating, but you are part of a community that understands more than you may realize. Just getting through each day requires courage most people never have to find and that courage already makes you an advocate, even if you don’t call yourself one.

If you’re wondering how to start, begin small. Start real. Start now.

• Write a sentence about your experience.
• Share a thought with a friend.
• Join a support group or comment on a post that resonates.

You don’t need a stage or a program. You just need a single moment of truth.

Start by sharing

When you speak, someone else finds the courage to speak too. And when you turn your pain into purpose, you help shape a world that listens more closely to those living with rare disease. Your voice carries hope. Your story offers comfort. And when we lift each other up, this journey becomes a little lighter for all of us.

You don’t have to be loud to be life changing. You just have to be willing to share.

Bio

Jim Kuhn is a rare disease patient, advocate, speaker, and mentor. Diagnosed in 2014 with sarcoidosis-associated ILD, he also lives with several closely related rare conditions. His complex medical challenges have left him fully disabled since 2016.

Before his diagnosis, Jim spent more than 30 years as a successful global business leader, concluding his career with five years of full-time missionary work. Today, he is an accomplished speaker and a regular blog contributor, sharing insight into life as a rare disease warrior.

Jim and his wife of 38 years refuse to let disability diminish their joy. Living in the Greater Orlando area, he still finds ways to enjoy gardening, movies, travel, and time with family. Together, they’ve learned to cherish each day and live fully in the moment.