Session 1 Update
Unfortunately, we had some technical issues on Wednesday and could not record the session as planned for our On-Demand audience. The good news is that Dr. Catherine Biggs and Dr. Dzung Vo don’t want you to miss out! They’ll be re-recording an extended version of their presentation for you. Since this is a special recording, it will take us some extra time to prepare.
What does this mean for you? We’ll need to delay the program start date by one week. However, this short delay will allow us to make sure we’re providing you with the best content possible. We apologize for any inconvenience.
The new schedule is detailed below. We will send you a newsletter for all the details for watching the ‘Technology in Rare Disease Diagnosis and Care’ session on October 31.
If you have any questions, you can reach us at researchevents@phsa.ca.
Schedule
- Technology in Rare Disease Diagnosis and Care: Friday, October 31 – Sunday, November 9
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Recording Link
Weekly Newsletter
Slides - Dr. Bruce Carleton's Presentation
Slides - Dr. Anna Lehman's Presentation
You will have between October 31 – November 9 to watch the session on-demand.
This is a recording of the Mini Med School live session held earlier in the week;
it is not in real-time. You won't be able to ask the presenters questions.Topic: Technology in Rare Disease Diagnosis and Care
In this session, we will uncover how current and emerging technologies are reshaping the way we understand, diagnose, and treat rare diseases. We will explore how tools like genetic testing, biomarkers, and precision medicine are improving diagnosis, predicting treatment responses, and personalizing care. We’ll also look ahead to the future, examining how artificial intelligence and machine learning are being used to forecast disease progression and treatment outcomes, and what other new innovations may be on the horizon.Presentations:
- Using the Human Genome to Understand Medication Response
Medication responses range from effective, harm-free outcomes to ineffective treatment and severe drug-induced harm. Why does one patient experience severe side effects when another patient can take the same drug, at the same dose, for the same period of time and not experience any adverse effects? This key question is at the heart of Dr. Carleton's work to understand what makes patients susceptible to tragic adverse drug reactions. The goal is to find the genetic basis for these reactions and then test patients for these genetic traits before drug therapy begins, thus avoiding drug-induced harm. As well, genetic markers that protect against drug-induced harm, or markers that are strongly predictive of ineffectiveness, are also important to find to improve the safety and effectiveness of drug therapy used to treat human diseases. The next big step of this work is to find super responders — patients who have extraordinary, miraculous responses to drug therapy. We can then try to de-code the genetic traits that make this possible so such traits can be explored in patients without these extraordinary response traits — thereby improving and optimizing medication responses for as many patients as possible.
Presented by Dr. Bruce Carleton, Researcher, BC Children's Hospital; Director, MedSafe Clinics at BC Children's and St. Paul's Hospitals; Professor, Department of Pediatrics, UBC
- Fast Tracks in Slow Conditions: Biomarkers in Rare Disease Clinical Trials
A biomarker is a measurable indicator of a normal or disease process. Biomarkers can provide important information about how a disease is progressing or responding to treatment in an individual. Although a biomarker is often directly causing the bad outcome a person experiences, sometimes they are bystanders that are tied to the disease, but not causing it. In many rare diseases, the bad outcomes (eg., loss of mobility, organ failure) happen gradually or infrequently, which makes it hard to use a bad outcome as the measure of success or failure of a new drug in a clinical trial. An added problem is how few people have the disease, further lowering the chance of seeing an effect on outcomes. A good biomarker, however, can change quickly in most people when a treatment is working. This talk will explore examples of useful biomarkers leading to new treatment discoveries, as well as unhelpful biomarkers leading to wasted resources on ineffective treatments for rare diseases.
Presented by Dr. Anna Lehman, Researcher, BC Children's Hospital; Medical Director, Adult Metabolic Diseases Clinic, Vancouver General Hospital; Associate Professor, Department of Medical Genetics, UBC
- Using the Human Genome to Understand Medication Response
- Collaboration in Science and Healthcare: Friday, November 7 – Sunday, November 16
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Recording Link & Weekly Newsletter (Coming Soon!)
You will have between November 7 – November 16 to watch the session on-demand.
This is a recording of the Mini Med School live session held earlier in the week;
it is not in real-time. You won't be able to ask the presenters questions.Topic: Collaboration in Science and Healthcare
Learn about the impact of interdisciplinary teamwork in tackling the complex challenges of rare diseases. You will discover why rare disease research and care demand collaboration across diverse fields and often require international partnerships to advance understanding and treatment. We will also take a closer look at the concept of shared decision-making, highlighting why involving patients, families, and healthcare professionals together in medical decisions is especially important in providing the best care.
Speakers:- Dr. Kelly Brown, Researcher, BC Children's Hospital; Associate Professor, Department of Pediatrics, UBC
- Dr. Sarah Felton, Clinical Associate Professor, Division of Dermatology, Department of Pediatrics, UBC
- Dr. Kelly Brown, Researcher, BC Children's Hospital; Associate Professor, Department of Pediatrics, UBC
- Navigating the Future of Rare Disease Care: Friday, November 14 – Sunday, November 23
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Recording Link & Weekly Newsletter (Coming Soon!)
You will have between November 14 – November 23 to watch the session on-demand.
This is a recording of the Mini Med School live session held earlier in the week;
it is not in real-time. You won't be able to ask the presenters questions.Topic: Navigating the Future of Rare Disease Care
Investigate how cutting-edge research in rare diseases is driving global policy changes, and learn about the importance of preparing for scientific breakthroughs while ensuring fair access for all patients. We will explore the advances in precision medicine as well as the ethical challenges. We’ll also look on a global scale, discussing strategies on how to promote equitable access to rare disease treatments around the world. This session will highlight the crucial role of patient advocacy groups in influencing policy, provide an overview of regulatory processes such as Health Canada’s role in treatment approval, and discuss how governments and the private sector invest in rare disease initiatives.Speakers:
- Dr. Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders
- Dr. Kelly Brown, Researcher, BC Children's Hospital; Associate Professor, Department of Pediatrics, UBC
- Dr. Bruce Carleton, Researcher, BC Children's Hospital; Director, MedSafe Clinics at BC Children's and St. Paul's Hospitals; Professor, Department of Pediatrics, UBC
- Dr. Durhane Wong-Rieger, President and CEO, Canadian Organization for Rare Disorders
- Exploring Rare Diseases and Health (In)Equity: Friday, November 21 – Sunday, November 30
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Recording Link & Weekly Newsletter (Coming Soon!)
Slides - Dr. Dzung Vo's Presentation
Slides: Dr. Catherine Biggs' Presentation – Part 1 | Part 2You will have between November 21 – November 30 to watch the session on-demand.
This is a recording of the Mini Med School live session held earlier in the week;
it is not in real-time. You won't be able to ask the presenters questions.Topic: Exploring Rare Diseases and Health (In)Equity
What makes rare diseases so difficult to diagnose and treat — and why do equity issues so often arise in their management? In this session, we will explore the complex challenges of diagnosing and treating rare diseases, including the emotional toll on patients, diagnostic delays, and the evolving role of genetic testing. We will also examine key health equity issues — such as limited access to care, socioeconomic and geographic barriers, bias in clinical research, and the lack of funding that often leaves rare disease communities underserved.
Presentations:- Zen and the Art of Cultivating Mindfulness in the Face of Illness and Suffering
Mindfulness means “Paying attention in a particular way: On purpose, in the present moment, and with unconditional love” (modified from J Kabat-Zinn). Emerging mindfulness-based interventions for youth are showing significant promise in helping adolescents to cope with adversity, improve health, promote resilience and positive youth development, and alleviate suffering. In this interactive presentation, we will discuss the science and practice of mindfulness-based interventions with adolescents; share practical mindfulness exercises that youth-serving professionals can use in their work and personal self-care strategies; and share mindfulness resources for youth, families, and professionals.
Presented by Dr. Dzung Vo, Researcher and Adolescent Medicine Specialist, BC Children's Hospital; Clinical Associate Professor, Division of Adolescent Health and Medicine, Department of Pediatrics, UBC
- Finding the Needle in the Haystack – A Journey Through Rare Disease Discovery
Rare diseases impact an estimated 1 million Canadian families. However, too often individuals with a rare disease face long and difficult journeys before arriving at a diagnosis. Diagnosing rare diseases is critical – it provides an answer to otherwise unexplained symptoms, and can help identify treatments that address the underlying cause of disease. This talk will review the role of clinician scientists in rare disease discovery — from the bedside,
to the bench, and back!
Presented by Dr. Catherine Biggs, Researcher and Pediatric Immunologist, BC Children's Hospital; Clinical Associate Professor, Division of Allergy & Immunology, Department of Pediatrics, UBC
- Zen and the Art of Cultivating Mindfulness in the Face of Illness and Suffering
Navigating Technology
After the live session, the recorded content will be available online. To get started:
- Click the recording link for your respective session (available in the weekly newsletter or posted in the drop-down menu above when available)
- On the Zoom registration page, enter your full name, email and school name. This will be used to track your online participation
- You will be able to watch the recording over any browser on computer, tablet or smartphone
Important: you need to watch the ENTIRE session for it to be counted towards your attendance, and your Zoom display name must match the name you used to register for Mini Med School.
Need technical support? Contact researchevents@phsa.ca.
FAQ
Do you have additional questions about Mini Med School? Check out the FAQ page or contact researchevents@phsa.ca.
How will you track my attendance?
Zoom automatically tracks your attendance. To access the recording, you will see a Zoom registration page asking for your full name, email and school name. Please use the same name and email you used for your Mini Med School application to ensure we accurately track your participation.
The Mini Med School Team will use this data to confirm your participation in all four sessions — this includes your name, the time you joined, and your total watch time for each session. Please note: you need to watch the ENTIRE session for it to be counted towards your attendance.
How long do I have to watch each recording to have it count towards attendance?
In order to be marked for attendance, you must watch the entire recording by the deadline of each session. Your attendance will not be reflected properly if you only watch part of the recording, or if you complete it after the respective deadline.
- Technology in Rare Disease Diagnosis and Care: Watch online between Friday, October 31 to Sunday, November 9
- Collaboration in Science and Healthcare: Watch online between Friday, November 7 to Sunday, November 16
- Navigating the Future of Rare Disease Care: Watch online between Friday, November 14 to Sunday, November 23
- Exploring Rare Diseases and Health (In)Equity: Watch online between Friday, November 21 to Sunday, November 30
What do I do if my screen freezes or my audio is out of sync?
Try refreshing your webpage. If that doesn’t work, you can close and log back into the session, or try using a different device or internet browser.
Do I need to watch the full session in one sitting?
No, you can break down the session into smaller periods over multiple days. Depending on your computer settings, you may be asked to register each time you click the link to view the recorded content.
How many sessions do I have to attend to receive a certificate of participation?
You need to watch all 4 sessions in their entirety to be eligible for the certificate of participation. Partial watch times will not count. Every time you login, your viewing participation will be tracked by the Mini Med School Team.
How do I request a certificate of participation?
At the end of the series, participants will be asked to complete an evaluation form in the weekly bulletin. On the evaluation form you will have the opportunity to request an electronic certificate of participation that will be emailed to you in mid-December.
Can Mini Med School be counted towards my work experience requirements?
Mini Med School could be classified as an unpaid career-related work experience that includes career investigation. We encourage you to verify this with your school or career counsellor. Forms can be sent to researchevents@phsa.ca for electronic signature before or after the event.
How do I apply for the Mini Med School Scholarship?
Details for applying for the Mini Med School Scholarship can be found here.