A Crisis in Care: Improving Outcomes for Patients with Neurofibromatosis

(a virtual forum)

Saturday, September 26, 2020 - 10:00am

The 2020 online forum on September 26th will feature interactive panel presentations where you can connect with medical experts and other community members. This is an opportunity to share your ideas about your clinic vision and learn more about what is possible for patients with NF.

All forum participants will be entered to win a $100 e-gift card of their choice.


10:00 am PST: Models of Clinical Care

Dr. Gelareh Zadeh from the Toronto NF clinic and Lynda Brown' Ganzert, Founder and CEO of Curatio, will share their knowledge on clinical care models as we dive into what healthcare could look like for the neurofibromatosis population of BC.

Dr. Gelareh Zadeh

Dr. Gelareh Zadeh is an Associate Professor at the Department of Surgery University of Toronto. She is a neurosurgeon-scientist at Toronto Western Hospital, University Health Network. She was most recently appointed as the Wilkins Family Chair in Brain Tumor Research. Her clinical practice focuses on skull base neuro-oncology, with a dedicated general brain tumour clinic and many multidisciplinary clinics that she has established and is actively involved with such as skull base, pituitary, brain metastases, gamma knife and neurofibromatosis clinic. She is actively involved with and is dedicated to the goal of advancing surgical clinical trials.

Lynda Brown Ganzert

Lynda Brown-Ganzert is the CEO of Curatio, a digital health platform that helps patients find one another and the support they need. No Patient Alone, is the company’s mission and the platform is now used in 102 countries and available in 20 languages.

Widely regarded as a digital media expert who has played an active role in growing the sector across Canada, Lynda served in senior roles at companies such as Electronic Arts, Edelman and Nordicity. She was instrumental in establishing the Center for Digital Media in 2007 and home to Canada’s first Master of Digital Media program. She has represented Canada on two UN missions.

Lynda has won numerous awards as an entrepreneur, including BIV’s Top Forty Under 40, Novartis Health 2.0 Global Challenge, Entrepreneur of the Year BC and most recently, the global Venture Clash competition. She serves on the board of the Canada Foundation for Innovation, mentors numerous companies and female founders and has been a director on many boards, including the Information Technology Association of Canada, Emily Carr University and holds the title of Chair Emerita at Simon Fraser University, where she had previously graduated with a Master of Education and a Bachelor of Arts (Communications).

About Curatio

No Patient Alone. Curatio helps health organizations deliver secure and compliant patient support at scale that keeps patients and their families safe, connected and empowered to manage their condition at home. The platform uses proprietary matchmaking, AI and machine learning to match patients to the peer support, health education, daily tracking tools and virtual monitoring systems they need while also delivering efficiencies, insights and workflow improvements to providers, payers, research, non-profit and pharmaceutical entities. Curatio is the only privacy and regulatory compliant social platform designed specifically for healthcare.

11:00 am PST: The Reality of Living with NF in BC

There will be a review of the results of the recent Health Care survey with a focus on what the findings mean for creating an advocacy strategy for a NF clinic in British Columbia.

12:00 pm noon PST: Pain and Mental Wellness

Join us to learn more about the effects of chronic pain on daily living, plus, discover new community resources for learning to live with chronic pain.

One of the top complaints of our 2020 survey was tumours, followed by pain. Despite being a commonly experienced symptom of the NF community, there are no available pain prescriptions to specifically treat NF pain. Come learn about what resources are available to support you living with chronic pain today.

Dorota Hedzelek, as one of Pain BC’s Directors oversees the Support Services programs at Pain BC, which provide direct support to people living with pain. She is a Registered Clinical Counsellor with over 20 years of experience in providing counselling and social work services nationally and internationally. Dorota holds a Master’s Degree in Clinical Psychology from Pepperdine University and a PhD in Medical Sciences from Poznan University of Medical Sciences.

Dr. Buch is a BC registered psychologist whose scope of practice is in psycho-legal assessment, consultation, and treatment in clinical and rehabilitation psychology. He has an M.A. in Counselling Psychology and Ph.D. in Interdisciplinary Studies (Clinical & Counselling Psychology) from the University of British Columbia. He is currently finishing a second doctorate at the University of Toronto with a research focus on clergy depression in Canada.

In 1997 he co-founded Behavioural Health Care with an interest in individually tailored, cognitive-behavioural approaches to chronic conditions that emphasize rehabilitation at home, in community facilities and even the workplace.

Currently, Dr. Buch’s focus is on psycholegal assessments for court purposes, the treatment of complex forms of human suffering, such as fibromyalgia, complex regional pain syndrome and chronic fatigue syndrome, and research in clergy depression.

Dr. Buch joined the Board of Directors of Pain BC in 2016 and enjoys working on the Education Committee. He has been particularly interested in education and consultation for frontline workers in the Integrated Health Care Clinics regarding chronic pain in Vancouver’s Downtown East Side.

All forum participants will be entered to win a $100 amazon gift card.