Raising funds to support VHL research

Canadian VHL Alliance Scientific and Medical Advisory Council (SMAC)

We deeply thank members of the Scientific and Medical Advisory Council for their expertise and dedication to the CVHLA community.

About the SMAC:

The Canadian VHL Alliance Scientific and Medical Advisory council was founded in 2023 by Stephen Parrott, former CVHLA Chair, and Dr. Maryam Soleimani, Medical Oncologist and creator of Canada’s first VHL Clinic. The aim of the council is to increase access to VHL treatment and improve care pathways across Canada, share knowledge, and advocate for VHL care in Canada. Please contact the CVHLA for questions or if you’d like to become involved.

Members

Canadian VHL Alliance SMAC Terms of Reference (PDF link)

Renee Hofstedter

Renee Hofstedter, MSc, MHSc, CCGC, CGC, is a board certified genetic counsellor who graduated from the University of Toronto’s Masters of Genetic Counselling Program. She is currently working in Princess Margaret Cancer Centre offering genetic testing to patients at risk for hereditary cancer syndromes. Her niche is endocrine oncology where she works to mainstream Genetics into endocrine oncology clinics. Renee is on the medical advisory board of the Canadian VHL Alliance. She is also a member of the Ontario Health Provincial Genetics Program’s Genetics Education Reference Table. Prior to genetic counselling, Renee received a Masters in Education and taught high school Biology for ten years. Renee is passionate about improving genetic awareness and knowledge to enable people to make informed decisions regarding genetic testing.

Alexandra Volenik

Alexandra Volenik, MSc, CCGC, CGC, is a board certified genetic counsellor with a passion for helping individuals navigate the complexities of inherited conditions. For the past decade, she has been a part of the Familial Cancer Clinic at Princess Margaret Cancer Centre, providing comprehensive genetic counseling services to individuals and families affected by hereditary cancer syndromes, including VHL.

She is a member of the CVHLA Scientific Medical Advisory Board. Beyond her clinical work, Alexandra is committed to advancing the field of genetic counselling through research, education, and advocacy. She is involved in professional organizations and collaborates with colleagues to improve patient care and promote awareness of genetic conditions.

Dr Maryam Soleimani

Dr. Maryam Soleimani is a Genitourinary Medical Oncologist at BC Cancer, Vancouver Cancer Centre and a clinical assistant professor at the University of British Columbia. 

She completed her Bachelor of Science and MD degree followed by Internal Medicine residency at the University of Alberta. She then completed Medical Oncology residency at UBC, followed by a clinical and research fellowship, with a special interest in immuno-oncology, renal cell carcinoma and cancer care delivery. She has received multiple recognitions for her academic work. She is actively involved in both clinical and translational research, and in oncology clinical trials, with a successful track record of publications in peer-reviewed journals. 

In 2022, after identifying an unmet need, she founded the BC Cancer von Hippel Lindau Clinic, which is the first comprehensive clinic in Canada for patients with VHL. She is also leading the development of the Canadian VHL Clinical and Research Consortium and is chair of the Scientific and Medical Advisory Council of the Canadian VHL Alliance.

Jess Pearson

Chair of the CVHLA, Jess is passionate about VHL healthcare in Canada. Graduating from uOttawa in 2017 as a Registered Nurse she pursued her interests in community health and chronic disease management, earning certifications as a Community Health Nurse and a Diabetes Educator.

Get in Touch. Get Involved.

Become a volunteer and help make a change! VHL is a rare disease, and we need your help to focus attention and awareness on VHL to the public.