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Join us this Rare Disease Day for a celebration of the rare disease community’s ongoing courage and resilience in the face of the pandemic. It has been nearly a year since the global COVID-19 pandemic outbreak and our lives have been irrevocably affected. We have all coped with the ups, downs, rollercoaster twists and turns the pandemic has triggered in our lives in different ways, yet here we are today. Still standing.

On this day, we will be honoring our community with engaging presentations on mental health during the pandemic, research on medically complex children’s needs, in addition to exciting community announcements.

Attendees will have a chance to win 1 of 20 gift boxes valued at $250 each.

Congratulations to the following webinar attendees!
They have each won a Gift Box. We will reach out via email in the coming week to arrange for delivery. 

  • Allison Jonds
  • Anne Mullen Grey
  • Brianna Perry
  • Cheryl Fertich
  • Debbie Naugler
  • Emilie Cotton
  • Kelly Ebbers
  • Kirsten Harkins
  • Kym Bohachewski
  • Laurie Jones
  • Lindsay Colby
  • Lori Lovens
  • Rim Danaitis
  • Roberta Larice
  • Sherri Birkett
  • Stephanie Leclerc
  • Susan Wu
  • Tara Twaddle
  • Vivian Cheng
  • William Gibson


Agenda

1:50 pm 

Webinar Open

1:55 pm 

Welcome & Board Chair Keynote Announcement

2:10 pm 

Presentation on Resilience
Cat Anderson, Spiritual Director at REACH Trauma            

2:25 pm 

Sharing Stories of Resilience

2:55 pm 

Announcement

3:00 pm

Break

3:10 pm 

"Measuring What Is Important To Children With Medical Complexity & Their Caregivers", Dr. Nora Fayed

3:20 pm 

Q & A, moderated by Dr. Millan Patel

3:25 pm 

“Experiences of Medical Trauma in Parents of Children with Medical Complexity”, Dr. Tammie Dewan

3:35 pm 

Q & A, moderated by Dr. Millan Patel

3:40 pm 

Announcement of Gift Box Winners and Closing Remarks

 

Expert Panel

Cat Anderson

Cat Anderson, SD, REACH Trauma Response Consulting

Cat focuses on supporting people in their life’s journey by offering a safe and non-judgmental space to explore life experiences – whether in times of curiosity, confusion, or suffering. Her areas of expertise are trauma, neglect, abuse, and suicide. Complementing these focus areas is her role as End of Life Care Doula in which she supports individuals and families as they transition through terminal diagnosis, grief, death, and bereavement.

She is of the belief that connection and integration of our mental, emotional, spiritual, and physical domains is not only desirable but necessary to finding wholeness to respond to all of life’s challenges from a place of resilience.

Cat has trained under Dr. George Everly as a Trauma / Critical Incident Responder and Crisis Scene Manager. She is highly skilled in Critical Incident Stress Management (CISM) protocol which she integrates into her practice.  

Dr. Nora Fayed

Dr. Nora Fayed, Queen's University

Dr. Fayed currently spearheads “Everything that Counts”, a research program dedicated to learning about what is important to children growing up with chronic health conditions then finding and implementing measures to capture what matters. She states “There is a strong need in service provision to understand what is important to children with chronic health needs and measure it. Good measurement tools are essential to moving health care innovations forward, but they also have to include the types of things that will have an impact on children’s lives.”

Her areas of expertise include: determinants and predictors of quality of life among children with chronic health conditions, child and parent patient-reported outcome and experience measures (PROMs/PREMs), health services evaluations, application of the WHO International Classification of Functioning, Disability and Health (ICF) to child chronic health services research.

Dr. Fayed also has clinical experience in driver rehabilitation and feeding obtained from Holland Bloorview Kids Rehabilitation Hospital in Toronto, Ontario. She is currently the co-Chair of the International Society of Quality of Life (ISOQOL) Canadian Special Interest Group.

Dr. Tammie Dewan

Dr. Tammie Dewan, Alberta Children's Hospital

Dr. Dewan is a pediatrician at Alberta Children's Hospital and clinical assistant professor in the Department of Pediatrics at the University of Calgary. She is passionate about improving care for children with medical complexity, many of whom have rare diseases. Dr. Dewan's research program aims to improve care for these children/youth and their families by individualizing care, better incorporating patient/family perspectives, and minimizing unintended consequences.

An example of the latter is medical trauma and post-traumatic stress related to illness and medical care. Dr. Dewan has ongoing studies in these areas to investigating the nature and impact of medical trauma on parents of children with medical complexity, as well as establishing the prevalence of post-traumatic stress symptoms in this population.

Beth Dangerfield

Beth Dangerfield, Parent Partner

Beth is an Ontario Certified Teacher (OCT) with additional qualification and training in special education, teaching English as a second language and language and math remediation.  Currently Beth is the full-time caregiver for her daughter, Abby, who lives with a rare genetic metabolic condition called Long-chain L-3 hydroxyacyl-CoA dehydrogenase deficiency (LCHADD).

Beth dedicates a great deal of her time to her role as a Family Leader at Holland Bloorview Kids Rehabilitation Hospital where she helps develop and facilitate learning sessions for both clinicians and clinical students around patient and family centered care. She also volunteers with the Girl Guides of Canada and recently began working with the not-for-profit organization Help a Girl Out (HAGO) to develop and deliver educational workshops about menstruation and period poverty. 

Beth first got involved with the Rare Disease Foundation in 2013 as the co-lead of the Toronto Parent 2 Parent Support Group. In 2015, she focussed her efforts to reviewing microgrant applications, a role which she continues to exercise. Beth was the recipient of the Patient and Family Leadership Award from Children's Health Care Canada in 2019. 

Lelainia Lloyd, Patient Partner

Lelainia Lloyd, Patient Partner

Lelainia Lloyd is a rare disease patient, advocate and educator living on the beautiful west coast of Canada, just outside of Vancouver, BC. She is a columnist for Bionews. Her column, The View From Here reflects her life with Neuromyelitis Optica (NMO). She has also written for The Rick Hansen Foundation and the Canadian MS Society. Lelainia recently published a paper, A Tale of Two MRIs in the Journal of Medical Imaging & Radiology Sciences which was chosen as one of the Editor’s Top Five Papers of 2020.

 Lelainia is an ambassador with the Sumaira Foundation for NMO, Alexion Pharmaceuticals and the Canadian MS Society. She has served as a health mentor since 2012 with the UBC Interprofessional Health Mentors Program, teaching future health care professionals about patient-centred and collaborative care.

In 2011, Lelainia was recognized as a Rick Hansen Difference Maker and in 2015, she was  awarded the Queen Elizabeth II Diamond Jubilee medal for her lifetime of service to Canada.

Dr. Millan Patel

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 2021

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"
October 1, 2020

 

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.

The second episode of our webcast series is “COVID 19 & Kids”
November 26, 2020

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.

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, 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.