Diseases

Drugs for Rare Diseases

Newborn Screening Advisory Panel Members
Hilary Vallance

Dr. Hilary Vallance, MD, FRCPC, FCCMG 

British Columbia

Hilary Vallance

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.

Conflict of Interest Disclosure

Whitney Ayoub-Goulstone, BA, BPA 

British Columbia

Whitney

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.  

Conflict of Interest Disclosure

Whitney
Heather Heinrichs

Heather Heinrichs, RM, IBCLC

Northwest Territories

Heather Heinrichs

Heather Heinrichs is a registered midwife and helped establish a midwifery program and return birthing services to Hay River, Northwest Territories. Heather is a proud member of the National Council of Indigenous Midwives and firmly believes in their vision of there being Indigenous midwives working in every Indigenous community. 

Conflict of Interest Disclosure

Dr. Sam Wong, MD, FRCPC

Alberta and Northwest Territories

Sam Wong

Dr. Sam Wong is a pediatrician working part-time in Yellowknife in general pediatrics and is intensely interested in rural, northern, and Indigenous pediatric health. Sam is also a part-time hospital pediatrician at the Stollery Children’s Hospital in Edmonton and a clinical professor in the Department of Pediatrics at the University of Alberta, as well as the current Director of Medical Affairs, and former President (2020-2021) of the Canadian Pediatric Society.  

Conflict of Interest Disclosure

Sam Wong
Grace Johner

Grace Johner, BSc

Alberta

Grace Johner

Grace Johner is the Manager of Newborn Screening Programs at Alberta Health Services. Grace’s experience spans over 2 decades, with 14 years in population health, preceded by 14 years in the biotechnology and biopharmaceutical industries. Most recently, Grace oversaw the successful implementation of a provincial newborn hearing screening program and 2 bloodspot screening panel expansions. 

Conflict of Interest Disclosure 

Dr. Nick Antonishyn, MSc, PhD, D(ABMGG), FACMG, FCCMG

Saskatchewan

Nick Antonishyn

Dr. Nick Antonishyn is the Provincial Clinical Co-Lead for Genomics in Saskatchewan and a Molecular Geneticist. Nick has also received board certification from the American Board of Medical Genetics and Genomics and is an Assistant Professor with the Department of Pathology and Lab Medicine at the University of Saskatchewan and an Adjunct Professor with the University of Regina.  

Conflict of Interest Disclosure

Nick Antonishyn
Paul Van Caeseele

Dr. Paul Van Caeseele, MD, FRCPC

Manitoba

Paul Van Caeseele

Dr. Paul Van Caeseele is the Medical Director of Cadham Provincial Laboratory and Chair of the Manitoba Newborn Screening Committee. Paul is a consultant on the Pediatric Infectious Diseases Service, a Travel Health Physician at the WRHA Travel Health and Tropical Medicine Clinic, and a Professor in the Departments of Medical Microbiology and Infectious Diseases and Pediatrics and Child Health. 

Conflict of Interest Disclosure 

Dr. Durhane Wong-Rieger, PhD

Ontario

Durhane Wong-Rieger

Dr. Durhane Wong-Rieger is the President & CEO of the Canadian Organization for Rare Disorders, Chair of the Consumer Advocare Network, President & CEO of the Institute for Optimizing Health Outcomes and Chair of Canadian Heart Patient Alliance. Durhane has served and continues to serve on numerous national and international health policy advisory committees and panels on rare diseases.  

Conflict of Interest Disclosure

Durhane Wong-Rieger
Jennifer Milburn

Jennifer Milburn, MHA

Ontario

Jennifer Milburn

Jennifer Milburn is the Executive Director of Newborn Screening Ontario at the Children’s Hospital of Eastern Ontario in Ottawa. Jennifer has worked in progressive health care leadership positions for more than 15 years and volunteers as vice-chair of the Winchester District Hospital Board and treasurer of the Ottawa Birth and Wellness Centre Board. 

Conflict of Interest Disclosure 

Sara Wolfe, MBA ICD.D

Ontario

sara wolf

Sara Wolfe is a First Nations nurse and midwife with more than 25 years of experience working in the front lines and primary care. Sara was the founding partner and managing director of Seventh Generation Midwives Toronto, co-led the development and implementation of the Toronto Birth Centre, and was a community research associate with the Well Living House at the Centre for Research on Inner City Health at St. Michael’s Hospital.  

Conflict of Interest Disclosure 

sara wolf
Bartha Maria Knoppers

Prof. Bartha Maria Knoppers, PhD

Quebec

Bartha Maria Knoppers

Professor Bartha Maria Knoppers is a full professor, Canada Research Chair in Law and Medicine, and Founding Director of the Centre of Genomics and Policy at McGill University. Bartha was the founder of the Public Population Project in Genomics and CARTaGENE, Quebec’s population biobank. Bartha was also the chair of the Ethics and Governance Committee of the International Cancer Genome Consortium and the co-chair of the Regulatory and Ethics Workstream of the Global Alliance for Genomics and Health.  

Conflict of Interest Disclosure 

Dr. Yves Giguère, MD, PhD, FRCPC

Quebec

Yves Giguère

Dr. Yves Giguère is the Director of the Québec Newborn Blood Screening Program. He is also currently head of the Department of Laboratory Medicine of the CHU de Québec and Medical Director of the Capitale-Nationale Laboratory Services. Yves is a medical biochemist at the CHU de Québec-Université Laval, where the clinical practice is centred on newborn screening and molecular diagnostics, and a full professor at the Department of Molecular Biology, Medical Biochemistry and Pathology of the Faculty of Medicine, Université Laval.  

Conflict of Interest Disclosure 

Yves Giguère
Zaiping Liu

Dr. Zaiping Liu, MD, FRCPC

Nova Scotia

Zaiping Liu

Dr. Zaiping Liu is a practicing Diagnostic and Clinical Pathologist (general pathologist) at the IWK Woman’s and Children’s Health Centre in Halifax, NS. Zaiping is the medical lead of the Maritime NBS and Biochemical Genetics Testing services. Zaiping also completed their fellowship training in Medical Biochemistry, including targeted fellowship training in Newborn Screening and Biochemical Genetics Diagnosis.  

Conflict of Interest Disclosure