Held on the last day of February each year, Rare Disease Day aims to raise awareness among the public and policymakers about the many and underrepresented rare diseases affecting individuals across the globe, their impact on a patients quality of life, the need for improved access to treatments and the development of new therapies, as well as support for families.
Classified a rare disease, mitochondrial disease representation and awareness is crucial to help improve the lives of those affected. This Rare Disease Day MitoCanada joins the initiative, sharing Mito facts on our social media channels and presenting at the Rare Disease Day Public Information Event in Calgary.
rDNA (Rare Disease Network of Alberta) will be hosting a FREE public event on worldwide Rare Disease Day in Calgary, AB
The ghosts in our genes: Using DNA to find and treat rare diseases
WHERE: Patricia A. Whelan Performance Hall in the Calgary Central Library
WHEN: February 28, 2019
TIME: 12 pm – 3 pm
12:15pm – Welcome and Reception / Light Refreshments
12:30pm – What are Rare Diseases?
Speaker: Dr. Aneal Khan, President, Rare Disease Network of Alberta. Associate Professor of Medical Genetics and Pediatrics – Alberta Children’s Hospital Research Institute, Cumming School of Medicine, University of Calgary
1:00pm – MitoCanada: A family’s journey to find a diagnosis, treatment and quality of life for a child with a Rare (Mitochondrial) Disease
Speaker: Blaine Penny, Co-founder and CEO, MitoCanada
1:20pm – Next Generation Sequencing Technologies: Helping find a Diagnosis
Speaker: Dr. Dustin Hittel, Chief Scientific Officer, Discovery DNA
1:50pm – GOOD Canada: Accessing Resources when a Rare Disease is Suspected
Speaker: Dr. Hameed Khan, Founder & CEO, GOOD Canada
2:10 – Outrun Rare/Rare Disease Foundation: Parent advocacy and National Rare Disease Awareness
Speaker: David Proctor, Founder / Athlete of Outrun Rare
2:30 Open Questions from the Audience