As many as 30 million people in the United States - approximately 10 percent of the population - are living with a rare disease today, and 50 percent of rare diseases affect children. For Horizon, changing the odds in rare disease means delivering on its promise to bring meaningful therapies to patients, their families and the physicians who care for them. Horizon’s impact, however, goes beyond its medicines. In partnership with Gift of Adoption, Horizon has developed the #RAREis Adoption Fund to raise awareness around the challenges within rare disease adoptions and facilitate the adoption of more than 30 children with rare diseases.
In 2017, Horizon launched a social media program on Instagram called #RAREis™, which is designed to elevate the voices, faces and experiences of those living with or caring for someone with a rare disease. By elevating personal stories, RAREis strives to bring together the rare disease community. The initiative generates awareness, support and education for hundreds of rare disease states, and while each person has a unique experience, the initiative provides an opportunity to share the uncensored truth of their journeys. It has given a platform and a voice to those living with diseases so rare that no dedicated organization exists for their condition.
RAREis is anchored by a community website, as well as an Instagram page that showcases photos of people touched by rare disease and capture elements of their patient, caregiver or advocate experience. In addition to the photos and stories that Horizon shares, people throughout the rare disease community are encouraged to create their own RAREis photos and share via their preferred social media platform – whether Instagram, Facebook and/or Twitter – using the hashtag #RAREis.
In 2018, Horizon entered a creative partnership with the Sing Me A Story (SMAS) Foundation, to use the power of song to tell the stories of children in need, including those with rare diseases. With the help of the foundation, children write or draw their own stories and then a songwriter turns those personal journeys into songs, giving each child a voice. To date, we have partnered to develop 16 songs with three more launching this year. All songs are available for download via the Sing Me A Story website and donations for each download benefits Sing Me A Story and a non-profit organization supporting the specific child’s rare disease. And, Horizon matched donations up to $5,000 for three of the songs.
Most recently, Horizon furthered its commitment to the rare disease community by evolving #RAREis to develop the #RAREis Adoption Fund in partnership with Gift of Adoption. Gift of Adoption focuses on at-risk adoptions and adoptions for children with significant medical conditions. Approximately 35 percent of all adoptions completed through Gift of Adoption are for children with medical needs and almost 45 percent of those are for children with rare diseases. To help these families, we established the #RAREis Adoption Fund, which provides financial support to complete the final steps of adoption of these children. Horizon’s three-year commitment will support the adoption of more than 30 children living with rare diseases. This collaborative undertaking launched in 2019 will not only allow children living with rare diseases globally to find their forever homes, but also to be able to access the specialized care they need.
The #RAREis Adoption Fund will provide $150,000 over three years. Additionally, employees had the opportunity to personally contribute to the #RAREis Adoption Fund. All donations are eligible for company matching, doubling the impact of employees’ personal giving.
For Horizon, success is measured by the numbers that matter most – the number of lives touched, the number of lives changed and those Horizon works tirelessly to help save. The outcomes Horizon attains for patients – and the lengths it goes to achieve them – reflect the company ideals and relentless commitment to the communities it serves. Only by bringing attention to these greater challenges can we collectively develop and deliver meaningful change.
Although Horizon is addressing the unmet needs of the rare disease community though its development of medicines, it recognizes the opportunity to holistically support families that encounter significant emotional and financial burdens through solutions like #RAREis and the #RAREis Adoption Fund.
In creating a digital platform specifically for families living with the daily challenges of rare diseases, Horizon has connected a community that can empower itself through its vast knowledge and personal experiences. The community anecdotally shares obstacles they have encountered, reassuring each other that not only are resources available, but also that there is someone who can relate and understand.
In providing $150,000 over three years, the #RAREis Adoption Fund will connect over 30 children living with rare disease to their families. Horizon employees raised an additional $5,000 in the weeks leading up to the official launch of the initiative. The fund not only demonstrates Horizon’s commitment to the rare disease community and its leadership in corporate social responsibility, but also how deeply engrained supporting patients is within its culture.
