What is rare?

#RAREis elevating the voices, faces and experiences of people living with rare disease.

About the community

#RAREisTM began as a social media campaign launched in 2017 to elevate the voices, faces and experiences of the rare disease community. It has since grown into a global, multifaceted program from Amgen that provides individuals and families around the world with access to resources that connect, inform and educate as they navigate their daily lives. The hashtag (#), #RAREis, remains as a way to follow the conversation on social media and remains in the name and logo to represent the broader program and community. 

Download the #RAREis Whitepaper

Explore key findings from a comprehensive survey and live summit with Global advocate Grant awardees from 14 countries. Uncover the biggest challenges facing the rare disease community worldwide, including barriers to care, funding obstacles, mental health struggles, and hurdles to diversity, equity, and inclusion. Learn how we can collaborate to overcome these challenges and create lasting impact. Read the findings here!

#RAREis

#RAREis brings together a chorus of individuals speaking out to the world about rare disease and what #RAREis means to them. Tell the rare disease story you are passionate about.

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