Leanne Ward, MD, FRPCPC
Dr. Leanne Ward is a Professor of Pediatrics at the University of Ottawa where she has held a Research Chair in Pediatric Bone Health since 2010. She is the Scientific Director of the Ottawa Pediatric Bone Health Research Group, the Medical Director of the Pediatric Bone Health and Rare Bone Disease Clinic at the Children’s Hospital of Eastern Ontario (CHEO), a Senior Scientist at the CHEO Research Institute, and a Pediatric Endocrinologist in the Division of Endocrinology and Metabolism at CHEO.
Dr. Ward’s research program is dedicated to the study of bone development, and the diagnosis and treatment of bone disorders, in children with osteogenesis imperfecta, hypophosphatemia rickets, and osteoporosis due to chronic illnesses. She has served as an advisor to various international organizations including the Centres for Disease Control Clinical Care Guidelines for Duchenne Muscular Dystrophy, The International Late Effects of Childhood Cancer Guideline Harmonization Group, and the International Society for Clinical Densitometry.
Here is what she has to say about rare diseases:
1. In your opinion, what are some of the biggest challenges facing the rare disease community today?
There are myriad challenges facing the rare disease community, starting with the length of time to a formal diagnosis. An accurate diagnosis opens the doors to understanding the individual’s signs and symptoms, as well as the trajectory of the condition. Finding a team of health care providers with the necessary expertise to manage the condition is another major barrier, along with the limited availability of specialized therapies for the majority of individuals with rare diseases in Canada. Distance from experts plus time off work and school, as well as the emotional toll of living with a rare condition are additional hurdles. In my experience, individuals with rare conditions are extremely resilient, which is no surprise given all that they experience on their “rare journey”.
2. What are specific areas within the rare disease landscape that particularly excite you and why?
There are exciting initiatives under way across Canada including RareKids-CAN, a CIHR-funded program empowering pediatric rare disease clinical trials. The Canadian Rare Disease Network (CRDN), an initiative centred on enhancing the quality of life for patients and families affected by rare disease, will focus in parallel on improved standards of care and accelerating pre-clinical research, access to rare disease therapies, and holistic strategies to support patients on their journey. As a clinician scientist taking care of patients with rare bone disorders, I am particularly excited by efforts to improve access to specialized therapies that have the potential to make a significant difference in the life of an individual living with a rare condition.
3. How would you describe yourself in one sentence?
I would describe myself as passionate and earnest about my work, ignited by patients’ unmet needs and fueled by the relationships that are so critical to moving forward.