How Rare Disease Stories Are Being Expressed by Song
Advocacy Having a rare disease can be a harrowing experience, but these stories need to be heard. Music is just one way we can accomplish this.
At Horizon Pharma, we make medicines available for rare diseases. This includes efforts one might expect: research and development, manufacturing and distribution, patient support services, raising awareness among physicians and supporting patients who receive our medicines. A less obvious aspect of our work involves stories.
Reaching a larger audience
Listening to rare disease stories helps us understand the patient journey in ways that go beyond the basics. We have been inspired by these stories and have challenged ourselves to find ways to bring them to a larger audience.
Horizon launched the RAREis™ campaign in 2017 to raise awareness of the faces and stories of people living with rare disease. During the last year, some of these stories have been put to song. Through a partnership with the Sing Me a Story Foundation and Global Genes, Horizon is helping extend the reach of rare disease stories. Sing Me a Story helps children create a storybook, which can be about anything they choose.
Once complete, the storybooks are sent to recording artists from around the country who turn them into songs. The process brings the voices of children to the rest of the world through music. Depending on the family’s wishes, each of these songs — and associated videos — may be viewed on the RAREis playlist online.
The power of song
There is power in rare disease stories. The journey is often harrowing for families. It can include elements of confusion and fear, but also strength, connection and triumph. The power of these stories is illustrated by their capacity to make change. Stories have helped organize patient communities, raise funds for research and champion the development of new medicines.
The more we listen – whether through an event, a social media post or even a song – the more effective we can be at making a meaningful difference in the lives of people living with rare diseases.