Jane Bushby's Colleagues at Living in the Light
Jane Bushby's Contact Details
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Western Australia,Australia
Living in the Light
Jane Bushby's Company Details
Living in the Light is a patient advocacy initiative utilizing the potency of fine artphotography, compelling personal narratives, and engaging filmmaking to educate thebiotech and medical community about the realities of rare diseases and the unprecedentedeffect they have on families and daily life.This distinct concentration grew out of an understanding that the rare disease communityis comprised of many people and many voices. By shifting the focus from patient toperson, Living in the Light presents the dignified and sincere perspectives of individualsand 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 theirjourneys unfold.No matter who the patient is, it is the entire family that receives a diagnosis—everyoneis affected in some way. We understand this, and our approach is poised to honor andaccommodate the families we document. Since our founding in 2012, telling rare diseasestories has been our sole focus. It is what we are most passionate about and what we dobest. To date, we have interviewed and photographed more than 300 families, living withover 50 different rare conditions around the world.We are driven by our mission of empowering families and individuals affected by rarediseases 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, patientadvocacy organizations, and other industry leaders who are dedicated to developing newtherapies with the potential to treat a broad range of rare diseases.