#RAREis: Providing a voice for the rare-disease community

In the current era of “storytelling,” my team and I are always looking for nontraditional venues and partnerships to bring the stories of people impacted by rare diseases to life in a unique way.

In 2017, Horizon started a social media program on Instagram called #RAREis, which is designed to elevate the voices, faces and experiences of the rare disease community. Each person has a different experience, but #RAREis provides an opportunity to share the uncensored truth of their journey while demonstrating the power of community.

Since the initial #RAREis Instagram launch, it has evolved from a social media success story to an umbrella brand for all of Horizon’s work in rare disease. To date, we have used the platform to launch several unique partnerships.

The first is with the Sing Me A Story Foundation, which works with third-party organizations serving children in need—including those with rare diseases—to use the power of song to tell their stories. With the help of the foundation, children write or draw their own stories, and a songwriter turns those personal journeys into songs.