Library Services: Patient and Family Resources: Rare Conditions

Rare Conditions

General Resources

Featured topics on MyHealth.Alberta.ca:

Genetics - Information and support around conditions and health concerns related to genetics, including different types of testing.

AHS Clinical & Metabolic Genetics Program

Serving all Albertans across the lifespan and all health disciplines through our Edmonton and Calgary locations, outreach clinics in Medicine Hat, Lethbridge and Red Deer and through the use of telehealth. Learn More

Clinical & Metabolic Genetics Subspecialties:

Specialized Resources

Canadian Organization for Rare Disorders (CORD) - Links and Resources
CORD provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
National Organization for Rare Disorders (NORD) - Rare Disease Database
A-Z database list of rare diseases.
Regroupement québécois des maladies orphelines (RQMO)
RQMO brings together rare disease associations, individuals or family members of individuals with a rare disease and others interested in the cause of rare diseases.
Orhanet
A portal for rare diseases and orphan drugs.
MedlinePlus - Rare Diseases
It can be hard to find a specialist who knows how to treat your rare disease. Disease advocacy groups, rare disease organizations, and genetics clinics may help you to find one.
ClinicalTrials.gov
A database of privately and publicly funded clinical studies conducted around the world.

Patient and Family Resources

Rare Conditions

Rare Conditions

General Resources

Genetics - Information and support around conditions and health concerns related to genetics, including different types of testing.