Resources

Resources for Patients, Family Members, and Health Professionals

General Resources:


Learn About Genetics:

MedlinePlus: Genetics

Learn About Inborn Errors of Metabolism (Inherited Metabolic Disorders):

Inherited Metabolic Disorders: Symptoms, Diagnosis & Treatment – Cleveland Clinic

Inborn Errors of Metabolism – Intermountain Healthcare

Metabolic Disorders – MedlinePlus

Inborn errors of metabolism – MedlinePlus Medical Encyclopedia

What is an Inherited Metabolic Disorder? – Metabolic Support UK

What Are Inborn Errors of Metabolism – YouTube

Learn About Rare Diseases:

GARD (Genetic and Rare Diseases Information Center)

MedlinePlus – Genetic Conditions

Rare Disease Report Podcast

Learn About Mitochondrial Disease:

Mitochondrial Learning Tool – London Health Sciences Centre

Learn More About DNA Testing:

Discovery DNA – Click on “Learning Videos” at the top of the screen

What are the different types of genetic tests? – MedlinePlus Genetics

What is genome-wide sequencing? – Genome-wide Sequencing Ontario

Whole Exome Sequencing Secondary Findings – YouTube

Support/Advocacy Groups:

CORD (Canadian Organization for Rare Disorders)

NORD (National Organization for Rare Disorders)

RDI (Rare Diseases International)

CHRIM (Children’s Hospital Research Institute of Manitoba)

RareConnect

How to Collect Your Cheek Swab Sample:

Discovery DNA – Click on “Specimen Details” at the top of the screen and scroll down to the last page (page 8)

ORAcollect DNA user collection instructions – YouTube

Academic Resources:


Genetics & Metabolism – UM Libraries Homepage

Web Resources:

GeneReviews®

OMIM (Online Mendelian Inheritance in Man)

ACMG Newborn Screening ACT Sheets and Algorithms

Genetics Education Canada Knowledge Organization

Human Phenotype Ontology (HPO) Browser

ClinVar

Orphanet

Metabolic Programs in Canada:

Garrod Association

Canadian College of Medical Geneticists

Drug Approval Process in Canada:

Drug and Health Product Review and Approval – Canada.ca

Patented Medicine Prices Review Board

CADTH (Canadian Agency for Drugs and Technologies in Health)

pCPA (pan-Canadian Pharmaceutical Alliance)