Meet Erin Danzer, an FOP advocate

Growing up, Erin Danzer hid behind her “invisible disability.” 

If people couldn’t see the physical symptoms of her fibrodysplasia ossificans progressiva (FOP), she didn’t want to experience the discomfort of sharing her story or asking for help. 

Once her FOP progressed in her late teens and early twenties, she slowly started sharing—in person and online through social media. As she opened up, she realized by sharing her unique experience, she could find common ground and even encourage others in the FOP community.  

“Now I’ve found my voice,” Erin says. “Growing up, I feel like I didn’t really know what to advocate for. Am I advocating for myself or the community? And now I’ve found that I can do both.”

This year for Rare Disease Day on February 28, Erin had the opportunity to visit Capitol Hill to advocate for the rare disease community, including FOP. Through EveryLife Foundation's Young Adult Rare Representative (YARR), a rare disease advocacy group for young adults, she learned how to practice legislative advocacy and use her passion for storytelling to amplify not only her own voice but the voice of the entire FOP community. 

For the latest episode of the IFOPA's podcast series, Michelle Davis, IFOPA Executive Director, asked Erin to share more about her experience meeting with representatives on the Hill. We also discussed the barriers to advocacy—and how to take the next step in your own advocacy journey with friends, family, coworkers, and healthcare professionals.   

When Erin details her FOP experiences via Instagram captions, she said it can sometimes feel helpless. It’s easy to wonder if her story can make a real difference. 

But meeting with representatives from her home state of California revived her passion for advocacy and reminded her of the value of using her voice. 

“There is hope,” she says. “We are actually making progress, and it’s really exciting.” 

Erin is one of countless members of our IFOPA community who is fighting for better treatments and, ultimately, a cure for FOP. We are so grateful for all of you who bravely share your stories for the good of the entire community! 

Whether you’re comfortable advocating on behalf of FOP or if you’re just learning how to talk about your own story, Erin’s advice is invaluable for all of us.