In this episode, Hope Newport from the International FOP Association (IFOPA) and Neena Nizar from the Jansen’s Foundation come together to spotlight the power of connection within the rare disease and rare bone disease communities. They discuss how collaboration across organizations like the Rare Bone Disease Alliance and international partners has amplified advocacy, storytelling, and support for families around the world.

From celebrating global efforts, to sharing impactful grassroots stories from community advocates, Hope and Neena reflect on the importance of raising awareness, building a louder patient voice, and taking action year-round. They also highlight ways families can get involved through storytelling, legislative advocacy, and digital tools. 

Whether you're newly diagnosed, a seasoned advocate, or somewhere in between, this episode offers encouragement, inspiration, and practical steps to help you raise awareness and create change in the rare disease space.

Explore the IFOPA Advocacy Series resources.

Sign up for the Every Life Foundation action alert system.

Special thanks to our Rare Disease Day Platinum Sponsor, Regeneron Pharmaceuticals.