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

Uncommon ailments manifest in more than physical ways. The isolation of being ‘different’ takes a toll, too. Horizon’s Instagram campaign addresses the unseen effects of such maladies.

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.

Along with Global Genes, a leading rare disease patient advocacy organization, Horizon worked with Sing Me A Story to build the RAREis Playlist, a collection of songs about children living with rare diseases. To date, we have partnered to develop more than 15 songs. Donations for each download benefit Sing Me A Story and a nonprofit organization supporting the specific child’s rare disease.

The second partnership is a life-changing opportunity for kids with rare disease that we launched with Gift of Adoption. More than 35% of the financial grants provided by Gift of Adoption support finalizing adoptions of children with medical needs, and nearly 40% of these adoptions are for children with rare diseases.

In addition, many families who have a child with a rare disease open their homes again to another child with the same rare disease. To help these families, we established the #RAREis Adoption Fund, which provides financial support to complete the final steps of adoption of these children. Our three-year commitment will support the adoption of more than 30 children living with rare diseases.

We also recently launched RAREisCommunity.com, which provides people living with rare diseases, and those who care about them, a platform to share experiences, access resources for managing life transitions and connect to advocacy organizations.

We believe our impact must go beyond our medicines and our responsibility goes beyond our specific patient communities to the entire rare-disease community.

We are often asked what we “get” out of this type of altruistic campaign. The answer is simple: It’s the right thing to do for our patients and the communities we serve. Only by bringing attention to these greater challenges can we collectively develop and deliver meaningful change.

Geoff Curtis is executive vice president, corporate affairs and chief communications officer at Horizon Therapeutics, overseeing corporate and brand communications, government affairs, patient advocacy and corporate social responsibility. He has more than two decades of health communications experience and has held roles on the agency and client side.

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