By Jordyn Bugarin, who lives with FOP
Rare Disease Day is a reminder that behind every diagnosis is a person, a family, and a story. It’s a day about being seen, about connection, and about reminding the world that rare does not mean invisible. In that spirit, I’m excited to introduce Community Voices, a new blog space created for the IFOPA community.
Community Voices is a place for people impacted by FOP, to share what life really looks like. The good days and the hard ones. The moments that feel heavy and the ones that bring unexpected joy. It’s not about having the perfect words or the full picture figured out. It’s about honesty, reflection, and showing up as you are.
Living with FOP can feel isolating. Many of us have spent time feeling misunderstood or alone in our experiences. Hearing someone else tell a story that you personally relate to, can be so powerful. It can bring comfort, validation, and a sense of belonging that’s hard to put into words. That’s what this space is meant to offer.
You do not need to be a writer to contribute. You do not need to have everything figured out. If you have a perspective you are willing to share, your voice belongs here. Whether your piece is reflective, emotional, educational, or celebratory, it matters. Someone will see themselves in it.
I am honored to help introduce Community Voices and to be part of creating a space that is shaped by the people who live this reality every day. I hope you will read these stories, share them, and, when you feel ready, consider adding your own. Our voices are powerful. Together, they tell the story of our community.
A Note from the IFOPA
We are deeply grateful to Jordyn Bugarin for her vision, dedication, and leadership in launching Community Voices. This series represents an important step forward in our commitment to centering the lived experiences of the FOP community. We are honored to provide this platform and look forward to sharing the diverse stories, perspectives, and voices that make our community strong. Thank you, Jordyn, for helping us create a space where every voice matters.
