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As we enter the eighth month of the COVID-19 pandemic, we are facing more questions and uncertainty rather than assurance. Each day presents new and unexpected findings which impact the rare disease community – especially our youngest.

We are pleased to announce the second episode of our webcast series: “COVID 19 & Kids”. This Q&A session will feature a panel of experts in the fields of medical genetics, pediatrics, psychiatry, immunology, and will be moderated by our Chief Medical Officer, Dr. Millan Patel. Let’s come together to ask, listen, be heard, and learn. We can face COVID-19 together.

Expert Panel

Dr. S. Evelyn Stewart

Dr. Stewart is a child and adolescent psychiatrist and a clinical and neuroscience researcher. She is a Professor in the Department of Psychiatry, University of British Columbia (UBC) and is founding director of the BC Children’s Hospital (BCCH) Provincial Obsessive-Compulsive Disorder Clinic and Research Program in Vancouver, Canada. She has authored over 100 original papers, reviews and chapters on family, genetic, neuroimaging and treatment aspects of OCD and related illnesses throughout the lifespan.

Dr. Shawn George

Dr. George has extensive experience in pediatrics, having worked as a Clinical Assistant at the BC Children’s & Women’s Neonatal ICU and BCCH General Pediatric Clinic before joining Fairmont Pediatrics in 2008. He is currently involved in UBC’s Pediatric Residency Program as a member of the Resident Training Committee. He is also a Clinical Assistant Professor in the UBC Department of Pediatrics and Deputy Medical Director, Pediatrics and Newborn Care for BC Women's Hospital. He enjoys caring for children of all age groups but has maintained a strong interest in neonatal care.

Dr. Catherine Biggs

Dr. Biggs, an Immunologist, completed her Pediatrics Residency and Allergy/Immunology Fellowship at Boston Children’s Hospital, Harvard Medical School. As a trainee in Boston, she received the Frederick H. Lovejoy Jr. Residency Award and performed translational research on primary immunodeficiencies and immune dysregulatory syndromes. Dr. Biggs is currently part of the Allergy/Immunology Division at BC Children’s Hospital. Her research focuses on primary immune deficiency and dysregulatory syndromes (PIDs). These are conditions caused by genetic changes that affect how the immune system develops or functions. Through her research, she aims to improve health outcomes for patients suffering from PIDs using a translational approach that integrates clinical and laboratory-based research methods.

Kendra Downie, Patient Advocate

Kendra Downie was born and raised in Vancouver. She has a Bachelor of Arts from the University of British Columbia and holds a chef certificate from Pacific Institute of Culinary Arts. She is married to James and they have two children, London & Lachlan and a Mexican rescue dog named Honey. She is a board member for a private company and is very committed to dog rescue. She is a rare disease advocate and passionate to help the children that rare diseases affect.

Dr. Millan Patel, Moderator

Dr. Millan Patel is co-founder of Rare Disease Foundation and currently serves as its Chief Medical Officer and Director of Research. He is currently a Clinical Professor in the Department of Medical Genetics at the University of British Columbia and a Medical Geneticist with the Provincial Medical Genetics Program. His research focuses on finding the basis of and developing therapy for ultra-rare diseases as well as the application of high throughput technologies to diagnosis.

Our Rare Community in 2020

Countless rare disease patients, caregivers, and medical professionals from our community have reached out to us, many of whom are overwhelmed and struggling to cope with the impacts of COVID-19. Financial hardship, the burdens of lockdowns, and many healthcare concerns have contributed to a level of stress we simply haven't seen before.

The RDF Webcast: Offering Support, Bringing Us Together

Everyone has questions, and we want to help find answers. That's what this webcast series is about: bringing together patients, family members, medical professionals, healthcare experts, and researchers. Together, we can identify and even answer questions we couldn't tackle alone.

PREVIOUS EPISODES

The First Episode of our webcast series is "COVID-19 and the Challenges of Going Back to School"

Alana Newton

Alana is intimately familiar with the experience of living with a rare disease as both she and her son have Ehlers-Danlos syndrome, a rare genetic connective tissue disorder. With a background in nursing, Alana is currently a clinical counsellor working with adults with chronic complex health conditions.

Alana is also a RDF board director and the mental health program lead. She is passionate about increasing awareness about rare diseases and providing psychosocial and emotional support to the rare disease community.

Eric Schofield

Eric lives on Vancouver Island in Brentwood Bay, BC with his wife Krystle and two daughters Liliane and Alina. Alina, who is 4 years old, lives with a rare association called VACTERL. Eric is a Culinary Arts teacher at Stelly's secondary school in the Saanich school district.

Outside of work, Eric loves being active and enjoys canoeing, hiking, cycling, and playing basketball. But most of all, he uses his energy to play with his daughters in the forests, lakes and beaches near their home. His passions include learning about food, science, and parenting. Eric has been involved with the Rare Disease Foundation since the summer of 2016, when his daughter Alina was still living in the NICU in Vancouver.