This Rare Disease Day, we loved seeing the global FOP community and the broader rare disease community come together to celebrate strength, resilience, and the power of advocacy in action.

We're thrilled to share that our Rare Disease Day social media campaign saw a 68% increase in impressions compared to last year—proof that more people are learning about FOP and engaging with our mission!

In case you missed it, we also brought you two very special conversations:

Making FOP Visible in Malaysia

Led by IFOPA's Family Services Manager, Hope Newport, we sat down with Qusya and her daughter Aisyah, who lives with FOP in Malaysia, to learn about the groundbreaking advocacy work they're doing to elevate FOP on a national level. Their story is a powerful reminder of how grassroots advocacy can create meaningful change. Watch the full conversation here.

Embracing Digital Storytelling

Bernadette shared how she found the courage to share her FOP journey on TikTok—and how one video went viral with nearly 50,000 views. Learn more about Bernadette's inspiring story in this newsletter's lead article, and watch the full conversation on YouTube.

Both conversations remind us that advocacy looks different for everyone—but it always starts with someone brave enough to speak up. Thank you to Qusya, Aisyah, and Bernadette for showing us what's possible when we make rare disease visible.

And a special thank you to everyone who participated in Rare Disease Day by sharing posts, spreading awareness, and hosting events. Your voices made a difference—and we're just getting started.

FOP Awareness Day is right around the corner on April 23, and we can't wait to see how we'll come together once again to shine a light on FOP and our incredible community!