about

Living in the Light™ is a patient advocacy initiative utilizing the potency of fine art photography, compelling personal narratives, and engaging filmmaking to educate the biotech and medical community about the realities of rare diseases and the unprecedented effect they have on families and daily life.

Since our founding in 2012, telling rare disease 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 300 families, living with over 50 different rare conditions around the world including various types of leukodystrophy, muscular dystrophy, and lysosomal storage diseases.

 

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

Shifting the focus from patient to person™