Increasing Sanfilippo Syndrome Awareness through Children's Literature and Music

Abstract

: There is an ongoing effort to increase rare disease awareness amongst healthcare providers. This front is important and can help to address several challenges faced by rare disease patients, such as lengthy diagnosis times, difficulty in finding adequate providers of medical services and experts, and adequate treatment if one exists. On another front, there is the need for awareness among citizens and their support in the advocacy for public policies towards rare disease patients and families. Awareness campaigns are prevalent in social networks and fundraising events. In this poster, we present a complementary approach to engage society and promote rare disease awareness through children’s literature and music. A Portuguese teenager wrote a book (‘My Life with my sister’), describing simple and daily moments spent with her teenage sister affected by Sanfilippo syndrome. A professional illustrator designed and illustrated the book. The book is bilingual in Portuguese and English. The author, with the assistance of her music teacher, also composed a song which was recorded with the participation of professional musicians and made into a video clip telling their story and the books. The book and song promote the inclusion and love for people affected by rare diseases and their families. To increase outreach, sister organizations translated the book, adapted the song, and published/ recorded the material in Brazilian Portuguese and French. The proceeds from the sales go towards the Sanfilippo foundations in their respective countries to fund common research projects. The material is being advertised on social media, television, interviews, newspapers, podcasts, libraries, schools, bookshops, book fairs, and others. To date, more than eight hundred books have been sold to individuals and companies. The interviews and video clips add to more than twelve hundred views. The target audience is children, parents, teachers but also companies, and their employees.