THE GHOSTS IN OUR GENES: USING DNA TO FIND AND TREAT RARE DISEASES

We welcome and encourage everyone who wants to learn more about rare genetic disease to attend this event. (Health care professionals, researchers & the general public)

The event will feature informative videos, speakers and poster presentations.

More than 2000 Albertans have a rare genetic disease and many millions in the world are affected by some type of rare disease. Examples include: Cystic Fibrosis, Rhett Syndrome, Pompe Disease, Fabry Disease, Adrenoleukodystrophy and Mitochondrial Disease, just to name a few.

Agenda:

12:15 Welcome and Reception / Light Refreshments provided by a donor





12:30 What are Rare Diseases ?

Speaker: Dr. Aneal Khan, President, Rare Disease Network of Alberta









1:00 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





1:20 Next Generation Sequencing Technologies: Helping find a Diagnosis

Speaker: Dr. Dustin Hittel, Chief Scientific Officer, Discovery DNA





1:50 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





3:00 Adjournment















