Michael van Manen, MD, PhD, FRCPC(Peds,NICU,CIP) has a clinical practice as a physician in neonatal-perinatal medicine with the Stollery Children’s Hospital. His research is primarily concerned with relational ethics, situated within the tradition of phenomenology

Dr. Shailly Jain completed medical education at the University of Western Ontario and the Royal College residency in Medical Genetics at the University of Toronto. She did a Canadian College of Medical Genetics fellowship in biochemical genetics (metabolics) at the University of Toronto. She joined the Edmonton Medical Genetics clinic in 2012 and is currently the program director for the CCMG Biochemical Genetics fellowship. Her primary area of clinical expertise is diagnosing and treating children and adults with inherited metabolic diseases. Her interests include newborn screening, lysosomal storage disorders and liver transplant for inherited metabolic diseases.

Bridget Reineking, MS, RDN, CD provides scientific and strategic leadership across metabolic rare disease programs, with expertise in clinical trial design, data interpretation, publication development, Medical Affairs strategy, and metabolic nutrition. Ms. Reineking is a published author in metabolic nutrition, a contributor to peer‑reviewed literature, and a member of Genetic Metabolic Dietitians International. She holds degrees from the University of Wisconsin–Madison and Case Western Reserve University.

Katherine Duthie is Clinical Ethicist serving the many provincial health corporations and agencies that make up Alberta’s public healthcare system. She is the primary ethicist for the Royal Alexandra Hospital, where she completed her Ethics Fellowship, and has practiced for the past 10 years. Katherine is also an Assistant Clinical Professor with the John Dossetor Health Ethics Centre at the University of Alberta and sits as the Partnerships and Community Relationships officer for the Board of the Canadian Bioethics Society. Katherine also provides ethics support to other organizations in Canada, including the Fraser Health Authority and Canada’s Drug Agency. Her educational background is in public health, philosophy, and biology.

Explore the world of Mucopolysaccharidosis Type VI from a patient's point of view. Hallie MacLean will share her thoughts on diagnosis, day-to-day experiences, and her future aspirations.