Living in the Light exists to educate and empower members of the rare disease community as well as medical and scientific professionals who are dedicated to researching and developing future treatments for these conditions. Using a variety of media, including photography, video, and writing, Living in the Light hopes to shift the focus from the narrow parameters of the word “patient” to a more sophisticated, and humanized idea of a “person.” The complexities and stories of these individuals, their families, and their broader communities are highlighted, discussed, and celebrated. We hope to further the discussion around how medical professionals interact with patients, and seek to broadcast honest and intelligent feedback from those who are most dependent on the industry for life-sustaining support.

Living in the Light is proud to work with some of the leading companies developing treatments for Orphan-drug classified diseases. We seek to advocate both for companies doing good work, as well as their clientele. We work to raise awareness not just about the conditions themselves, but also the groundbreaking work that goes into treating them. We acknowledge that many rare diseases have no treatments or cures, and that while new platforms are rapidly advancing, there will always be those who are unable to receive treatment for a variety of reasons.