An Update on the Development of Newborn Screening Guidance in Canada 

Date: Thursday, July 11, 2024, 1:00 p.m. to 2:00 p.m. ET
Location: Free online event 

Join us as Dr. Hilary Vallance and Whitney Ayoub-Goulstone, cochairs of our Newborn Screening Advisory Panel, provide an update on our work to develop pan-Canadian guidance for newborn screening programs across the country in support of the Government of Canada’s National Strategy for Drugs for Rare Diseases. This update will focus on the foundational elements in scope for the advisory panel, including developing a proposed common set of guiding principles for newborn screening, exploring a proposed process and the criteria for the addition or removal of conditions, and recommending conditions that newborn screening programs in Canada could screen.

As part of this event, a discussion paper will be posted on our website with an open call for feedback.

Newborn screening tests are done shortly after birth to check for serious but treatable diseases. Early identification of rare diseases through newborn screening could lead to more timely diagnoses and appropriate access to treatments and supports early in life. Visit our website to learn more about this work.  

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Speakers

Dr. Hilary Vallance, MD, FRCPC, FCCMG  
Dr. Hilary Vallance is the Medical Director of the BC Newborn Screening Program and a medical biochemist and biochemical geneticist at BC Children’s Hospital. Hilary has worked in partnership with BC First Nations communities to research the clinical significance of a gene variant common in First Nations People in Canada. Hilary has more than 50 peer-reviewed publications on newborn screening and inborn errors of metabolism.  

Whitney Ayoub-Goulstone, BA, BPA  
Whitney Ayoub-Goulstone is the Executive Director of ImmUnity Canada. Whitney is also the past chair of the Network of Rare Blood Disorder Organizations, a board member of the International Patient Organisation for Primary Immunodeficiencies, a member of the patient network for the APEC Business Ethics Forum, and the Secondary Immune Deficiency Exploratory working group. Whitney has been working in patient advocacy and engagement for 15 years.