Genetic counselling
Canadian Association of Genetic Counsellors: The Canadian Association of Genetic Counsellors supports the genetic counselling profession in Canada.
Find a list of genetic clinics in Canada or visit
genetics questions, where certified genetic counsellors answer common questions.
National Society of Genetic Counselors: The National Society of Genetic Counselors supports the genetic counselling profession in the United States. Their website has information for the public about genetic counselling, including reasons to see a genetic counsellor and how to prepare for an appointment.
Organizations
Canadian Organization for Rare Disorders: The Canadian Organization for Rare Disorders (CORD) is Canada’s national network for organizations representing all those with rare disorders. CORD works with governments, researchers, clinicians, and industry to promote research, diagnosis, treatment, and services for all rare disorders in Canada. CORD’s mission is to provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
Canadian Rare Disease Network: The Canadian Rare Disease Network brings together Canada’s leading clinical, scientific, and patient expertise to address the unique challenges faced by those affected by rare diseases in Canada.
Genetics Education Canada: Knowledge Organization: Genetics Education Canada: Knowledge Organization (GECKO) is Canada’s first primary care-focused genomics knowledge centre. They develop resources for the public about genetic discrimination, basic genetic concepts, prenatal genetic testing, neurodevelopmental disorders, and advocacy.
iRARE Centres: The mission of Canadian iRARE Centres is to improve the lives of Canadians living with a rare disease by informing and supporting them, their caregivers, their families, and their health professionals. iRARE Centres provide information about rare disorders and connect patients and families with government services and community resources in their province.
Orphanet: An international group working with the rare disease community to offer quality, up-to-date information on rare disorders.
Rare Disease Foundation: A foundation consisting of patients, caregivers, researchers, and care providers committed to raising awareness and advocating for change, progress, research, and support for rare diseases. They offer a variety of resources for those affected by rare disease, including the
Living Without a Diagnosis booklet.
Unique: Unique is a charity with the mission to inform, support, and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant, or single gene disorder associated with learning disability or developmental delay. They offer a number of
free information guides to specific chromosome and gene disorders, as well as guides translated into various languages.
Research
Canadian Rare Disease Network: The Canadian Rare Disease Network brings together Canada’s leading clinical, scientific, and patient expertise to address the unique challenges faced by those affected by rare diseases in Canada.
Care4Rare Canada: Care4Rare is a team of clinicians, bioinformaticians, scientists, and researchers focused on improving the care of people with rare genetic diseases. Care4Rare includes 21 hospitals, universities, and health systems across Canada. They are leaders in the field of genomics and personalized investigations.
ClinicalTrials.gov: A U.S. National Institutes of Health website to provide information about clinical research studies to the public, researchers, and healthcare professionals.
GenomeConnect: GenomeConnect is an online patient registry where you can securely share your genetic and health information. Researchers and healthcare providers use this information to better understand the relationship between genetics and health, and to ultimately improve care for future patients. You also have the option to connect with others with similar genetic test results or diagnoses, learn about research opportunities, and get updates about your genetic test results.
Health Canada’s Clinical Trials Database: Health Canada's Clinical Trials Database is a list of information about clinical trials in patients. A clinical trial is a type of research study that tests the safety or effectiveness of a treatment or therapy on human participants. The database is managed by Health Canada and provides a source of information about Canadian clinical trials involving medicines for humans.
RareKids-CAN: RareKids-CAN is a group focused on simplifying and speeding up clinical trials and access to new treatments for children and youth with rare diseases across Canada.
Silent Genomes Project: A project working to increase access to genetic health care and resources for Indigenous children with genetic conditions.
VIPeR Registry: VIPeR (Verified Interest in Participating in Research) is a registry for people who have rare diseases or know somebody with a rare disease. After registering with VIPeR, they will contact you about new clinical trials and rare disease research.
Detailed medical information
Garrod Association: Also known as the Canadian Association of Centers for the Management of Hereditary Metabolic Disorders, the Garrod Association is a group of Canadian experts working together to coordinate the management of inherited metabolic disorders.
Genetics Education Canada: Knowledge Organization (GECKO): GECKO is Canada’s first primary care-focused genomics knowledge centre. They develop resources targeted towards clinicians on genomics education, genetic testing, and genetic conditions.
GeneReviews: GeneReviews is a medical resource with nearly 1,000 chapters about specific genes and genetic conditions. It covers diagnosis, management, and genetic counselling for patients and their families. Each chapter in GeneReviews is written and reviewed by one or more experts on the specific condition or disease.
MedlinePlus: Genetics: A U.S. National Institutes of Health website with information about genetics and genetic conditions.
