Living In The Light

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. This distinct concentration grew out of an understanding that the rare disease community is comprised of many people and many voices. By shifting the focus from patient to person, Living in the Light presents the dignified and sincere perspectives of individuals and their families as they approach major life challenges. Our work is not simply to record, but to convey the deep resilience, unique wisdom, and profound beauty of people as their journeys unfold. No matter who the patient is, it is the entire family that receives a diagnosis—everyone is affected in some way. We understand this, and our approach is poised to honor and accommodate the families we document. 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. We are driven by our mission of 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, and other industry leaders who are dedicated to developing new therapies with the potential to treat a broad range of rare diseases.