How Hemophilia: The Musical Became Part of a Larger Conversation About Loneliness and Rare Disease

Believe Limited and co-founder Patrick James Lynch were recently referenced in Project UnLonely: Healing Our Crisis of Disconnection by Jeremy Nobel, a book exploring the impact loneliness has on health and human connection.

Within the chapter focused on rare disease communities, Dr. Nobel highlights Hemophilia: The Musical, a program supported by BioMarin Pharmaceutical that brought teenagers living with hemophilia to New York City for a 72-hour musical theater intensive alongside Broadway professionals. Together, they created and performed an original show inspired by their lived experiences navigating rare disease, identity, and belonging.

The book discusses how rare disease communities often experience profound isolation and how storytelling and creative expression can help people feel more connected to one another.

Reflecting on the program, Dr. Nobel writes:

“The show also struck home a universal theme kids with hemophilia know better than most of us: fitting in can be hard for everyone at times… To be unlonely in this world, we each need to find ‘our’ people, the ones who accept us as we are and welcome hearing our story.”

That idea has always been central to the work we create at Believe Limited: storytelling can be a powerful tool for building community and helping patients feel less alone.

To this end, cast members surveyed in partnership with Dr. Nobel shared about the profound impact of the program:

100% of Cast Members left feeling more connected to
others with bleeding disorders;

100% of Cast Members left feeling more motivated in managing
all aspects of their bleeding disorder;

100% of Cast Members said they were more likely to
engage in the creative arts.

These particular results were exciting and empowering to all of us at Believe Limited, because we are a team of artists who know what the arts and self-expression has meant in our lives. It is thrilling and humbling to see that we are translating our passion into results for the community.