about

Living in the Light is a patient advocacy initiative producing unique and engaging content that educates the biotech industry and medical communities about the realities of rare and chronic diseases and the profound effect they have on families and daily life. 

 

This distinct concentration grew from an understanding that the rare disease community is a diverse patchwork of identities that reflect and intersect the larger world. Through a combination of fine art photography, compelling personal narratives, documentary films, advocacy events, and awareness campaigns, our work reintroduces a clear sense of humanity into an otherwise clinical field, knowing that both understandings are needed to bring new therapies to market and improve access. By shifting the focus from patient to person, Living in the Light presents each individual and their family with dignity as they face major life challenges. Our work is not simply to document, but to convey the resilience, wisdom, and beauty of people as their journeys unfold, while honoring and accommodating their needs.

 

Since our founding in 2012, telling rare stories has been our sole focus. It is what we are most passionate about and what we do best. To date, we have interviewed and photographed more than 400 families internationally, living with over 65 different chronic and rare conditions including various types of leukodystrophy, muscular dystrophy, and lysosomal storage disorders. 

  

At Living in the Light, we are driven by our mission: empowering families and individuals affected by rare and chronic diseases to be seen and heard as they relay their stories and advocate for their needs. Our work helps our partners form lasting relationships with patient communities, patient advocacy organizations, and other industry leaders who are dedicated to developing new therapies to treat and hopefully cure a broad range of rare and chronic diseases.

Shifting the focus from patient to person™