Clinical Resources
https://newenglandconsortium.org/for-professionals/acute-illness-protocols/
Acute Illness Protocols
http://www.bimdg.org.uk/site/index.asp
British Inherited Metabolic Disease Group Emergency protocols
Rare Disease Network, Urea Cycle Treatment Guidelines
https://www.rarechromo.org/disorder-guides
Rare Chromosome & Gene Disorder Guides
https://ddprimarycare.surreyplace.ca/tools-2/health-watch-tables/
Health Watch Tables for Selected Developmental and Related Disabilities – Preamble Developmental Disabilities Primary Care Initiative (2011), Surrey Place, Toronto
- https://www.gemssforschools.org/conditions
The New England Genetics Collaborative Genetic education material for school success
Educational material for Schools, Health Care Providers, and Families
Other Resources
American Board of Genetic Counseling (ABGC)
American Board of Medical Genetics (ABMG)
American College of Medical Genetics (ACMG)
American Society of Human Genetics (ASHG)
Association des médecins généticiens du Québec
Canadian Association of Genetic Counsellors (CAGC)
Canadian Association of Pathologists
Canadian Medical Professional Association
European Society of Human Genetics
Federation of National Specialty Societies of Canada
International Society of Nurses in Genetics
National Society of Genetic Counselors
Royal College of Physicians and Surgeons of Canada
Canadian Lysosomal Storage Disease Meeting
European Human Genetics Conference
Great Lakes Genomics Conference
International Society for Prenatal Diagnosis
McGill University Human Genetics Conference – April 26, 2024
General Resources
Canadians experiencing infertility, single parents, and same-sex couples are increasingly turning to assisted human reproduction (AHR) procedures to help build their families.
Gene Cure Biotechnologies is a privately-owned biotechnology company focused on developing gene therapy-based technologies to treat genetic and acquired human diseases.
Canadian Family Physicians Gene Messengers
Provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare disorders.
Empowering health professionals to continue delivering improved outcomes in health care and well-being for individuals, families and the community, by providing credible genetics and genomics resources and information, in collaboration with our clinical and research partner organizations.
GeneReviews is an online database containing standardized peer-reviewed articles that describe specific heritable diseases.
Genome Connect is an online registry designed by the Clinical Genome Resource (ClinGen) for people who are interested in sharing de-identified genetic and health information to improve their understanding of genetics and health.
Génome Québec’s mission is to catalyze the development and excellence of genomics research and promote its integration and democratization. It is a pillar of the Québec bioeconomy and contributes to Québec’s influence and its social and sustainable development.
This platform is designed for high school students and teachers in Science and Technology. It features basic concepts about genetics and introduces more advanced notions related to genomics. Génome Québec also offers free classroom activities that give students the opportunity to put their knowledge into action.
Global Variome provides support services to the international coordination work of the Human Variome Project; an international non-governmental organization that is working to ensure that all information on genetic variation and its effect on human health can be collected, curated, interpreted and shared freely and openly.
Health Education England’s Genomics Education Programme exists to deliver and advise on learning and development opportunities that prepare current and future NHS professionals to make the best use of genomics in their practice.
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
The portal for rare diseases and orphan drugs
