Your Voice

#RAREis brings together a chorus of individuals speaking out to the world about rare disease and what #RAREis means to them. It is a community that raises awareness of rare diseases by sharing stories, accomplishments, hopes, fears and dreams.

Share your #RAREis

Tell the rare disease story you are passionate about – click here, create a caption, and upload a photo or selfie.

Your photo may be featured on this website and on social media as part of Amgen’s #RAREis global campaign that highlights the faces and raises voices of people living with rare diseases around the world. To date, hundreds of rare disease stories have been shared across our social media channels, and many more people living with rare diseases and their families have proactively shared their own journeys with us. Here’s our story, we can hardly wait to hear yours!

Share Your Story

#RAREis™ Playlist

The story of a life impacted by rare disease and captured in song. In partnership with the Sing Me a Story Foundation, Amgen’s #RAREis Playlist is elevating the stories of children living with rare diseases by transforming them into songs. Stories written by the children themselves are delivered to professional songwriters and musicians, who tell them through song for #RAREis Playlist.

Songs on #RAREis Playlist reflect each child’s experience and support the many organizations advocating for those affected by rare disease.

Visit #RAREis Playlist to download songs and make a donation.

Donations for each download will benefit Sing Me A Story Foundation (SMAS) and the non-profit organization supporting the featured child’s rare disease community.

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