General Resources

Family History

Disease-Specific Resources

Genetics Education

Professional Societies

Patient Support

 

Family History

Family Medical History and Tools Resources Online www.genome.gov/11510372
American Medical Association (AMA) www.ama-assn.org/ama/pub/physician-resources/medical-science/genetics-molecular-medicine/family-history.page

 

Genetics Education

Sites with resources for both educators and learners.

The Genetics Education Program This website gives primary health care providers practical, current information regarding screening and prevention of hereditary disorders. It contains information about specific genetic disorders as well as links to other sites where you can find more information.

http://www.mountsinai.on.ca/care/family-medicine-genetics-program 

 

Genetics/Genomics Competency Centre for Education (G2C2) A ‘referatory’ funded by the NIH whose mission is to provide high quality educational resources for group instruction or self-directed learning in genetics/genomics by health care educators and practitioners. The G2C2 solicits, reviews and organizes resources through an interdisciplinary collaborative exchange.

http://www.g-2-c-2.org/index.php

 

The NHS National Genetics and Genomics Education Centre The NHS National Genetics and Genomics Education Centre was established in 2005 and funded by the Department of Health as one of the major initiatives of the 2003 Genetics White Paper ‘Our Inheritance, Our Future – Realising the potential of genetics in the NHS’. One of the main aims of the Centre was to improve the understanding of genetics among healthcare professionals and its role in modern healthcare.

Supporting the ongoing education of health professionals in genetics and, more recently, genomics has been a key component of our work, and this work will continue.

http://www.geneticseducation.nhs.uk/

 

The Jackson Laboratory

 

The Jackson Laboratory (JAX Lab) is an independent nonprofit organization leveraging eight decades of expertise in genetics and genomics to increase understanding of human disease and discover precise genomic solutions.

From high school summer programs to conferences that further the education of practicing scientists and professionals, The JAX Lab advances science and improve health through their commitment to education.

Education and Learning https://www.jax.org/education-and-learning

National Human Genome Research Institute (NHGRI) Educational materials about genetics and genomics.

http://www.genome.gov/

 

The Office of Public Health Genomics (OPHG), Centre for Disease Control (CDC) The Office of Public Health Genomics (OPHG) provides timely and credible information for the effective and responsible translation of genomics research into population health benefits.

http://www.cdc.gov/genomics/default.htm

 

Resources:

http://www.cdc.gov/genomics/resources/index.htm 

 

New South Wales Centre for Genetics Education The Centre for Genetics Education is a state wide service dedicated to providing current and relevant genetics information to individuals and family members affected by genetic conditions and the professionals who work with them. The Centre’s activities include the production of resources with an aim to bring genetics information to the widest audience possible.  http://www.genetics.edu.au/
Centre for Genetic Medicine by The Hospital for Sick Children  The Centre for Genetic Medicine is committed to providing quality sources of information about genetics and genomic medicine to patients, families, healthcare providers and the scientific community.

Educational resources here of particular interest to those learning/teaching about next-generation sequencing, whole genome and exome sequencing, testing and results.

Inside these pages you will find videos, interactive modules, brochures, web links to hospital services and much more.

http://www.sickkids.ca/CGM/education/index.html

Disease-Specific Resources

The ALS Society of CanadaThe ALS Society of Canada was founded in 1977 and is dedicated to supporting people living with ALS (amyotrophic lateral sclerosis), and investing in research for the future, so ALS will be a treatable, not terminal disease.

https://www.als.ca/
Alzheimer Society of CanadaThe Alzheimer Society is the leading not-for-profit health organization working nationwide to improve the quality of life for Canadians affected by Alzheimer disease and other dementias and advance the search for the cause and cure.

http://www.alzheimer.ca/
Canadian Hemochromatosis Society (CHS)The Canadian Hemochromatosis Society (CHS) promotes the early diagnosis of hemochromatosis by raising public awareness, informing the medical community, and encouraging early screening of at-risk populations. The CHS provides support and information to individuals and families affected by iron overload.

http://www.toomuchiron.ca/
Canadian Organization for Rare Disorders (CORD)CORD provides a strong common voice to advocate for health policy and a healthcare system that works for 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.

Education and support, providing information on thousands of rare disorders and advocating for funding and research.

http://www.raredisorders.ca/
Ehlers-Danlos Syndrome CanadaEhlers-Danlos Syndrome (EDS) Canada provides knowledge, advocacy and support to individuals and their families living with Ehlers-Danlos Syndrome.

www.ehlers-danlossyndromecanada.org
Familial Hypercholesterolemia (FH) CanadaFH Canada's vision is to create a Canada-wide network of academic clinics, integrating lipid specialists, endocrinologists and cardiologists to treat patients with the highest standard of care and to create a collaborative research environment. Using a “hub and spoke” model, the registry will be extended in various communities to link primary care physicians with provincial academic centers.

FH Canada's goals are to improve care to patients with FH and to reduce cardiovascular disease in this population at high risk.

http://www.fhcanada.net/
GeneReviewsGeneReviews are expert-authored, peer-reviewed disease descriptions (“chapters”) presented in a standardized format and focused on clinically relevant and medically actionable information on the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions.

GeneReviews currently comprises 616 chapters.

http://www.ncbi.nlm.nih.gov/books/NBK1116/
Huntington Society of CanadaThe Huntington Society of Canada is a not-for-profit charitable organization which raises funds to deliver individual and group counselling service to support individuals and families living with Huntington disease (HD) and to fund medical research to delay or stop the progression of the disease. The Society also works with health and social services professionals to enable them to better serve people living with HD.

http://www.huntingtonsociety.ca/
Multiple Sclerosis Society of CanadaThe MS Society provides services to people with multiple sclerosis and their families and funds research to find the cause and cure for this disease.

http://www.mssociety.ca/
Muscular Dystrophy CanadaMuscular Dystrophy Canada is a national, non-profit organization of dedicated volunteers and staff who continually work to provide support and resources to clients who are impacted by 1 of over 150 neuromuscular disorders. Through well-funded research, we are on a mission striving to find a cure as soon as possible.

http://www.muscle.ca/
National Organization for Rare Disorders (NORD)NORD is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

http://www.rarediseases.org/
Online Mendelian Inheritance in Man (OMIM)OMIM is a comprehensive, authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily. OMIM is authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine, under the direction of Dr. Ada Hamosh. Its official home is omim.org.

Users can search by disease name, patient phenotype or gene.

http://www.omim.org/
http://www.ncbi.nlm.nih.gov/omim
OrphanetOrphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.

www.orpha.net
PubMed HealthPubMed Health provides information for consumers and clinicians on prevention and treatment of diseases and conditions.

PubMed Health specializes in reviews of clinical effectiveness research, with easy-to-read summaries for consumers as well as full technical reports. Clinical effectiveness research finds answers to the question “What works?” in medical and health care.

PubMed Health is a service provided by the National Center for Biotechnology Information (NCBI) at the U.S. National Library of Medicine (NLM).

http://www.ncbi.nlm.nih.gov/pubmedhealth/s/diseases_and_conditions/
The Canadian Hemophilia Society (CHS)The Canadian Hemophilia Society (CHS) is a national voluntary health charity. Its mission is to improve the health and quality of life of all people with inherited bleeding disorders and ultimately to find a cure. Its vision is a world free from the pain and suffering of inherited bleeding disorders.

http://www.hemophilia.ca/
The Canadian Sudden Arrhythmia Death Syndromes (SADS) FoundationThe Canadian Sudden Arrhythmia Death Syndromes (SADS) Foundation, a registered Canadian charity, is the only patient advocacy group in Canada dedicated to supporting families affected by inherited cardiac rhythm disorders.

The Canadian SADS Foundation is also committed to raising awareness about "The Warning Signs" for these potentially devastating disorders. Ongoing awareness is essential to prevent the deaths of an estimated 700 children and young people who die from a SADS condition each year in Canada. Creating and sustaining awareness of SCD among medical professionals is also an integral part of the Foundation's work.

http://www.sads.ca/
UniqueUnique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. Unique is a UK-based charity but welcomes members worldwide.

http://www.rarechromo.org/html/home.asp

Find a collection of information about specific chromosome disorders in a comprehensive offline database that is family-friendly, medically-verified, disorder-specific information guides.

http://www.rarechromo.org/html/DisorderGuides.asp

Professional Societies

Canadian Association of Genetic Counsellors (CAGC) CAGC promotes high standards of practice, encourage professional growth and increase public awareness of the genetic counselling profession in Canada.

http://www.cagc-accg.ca/

 

Canadian College of Medical Geneticists (CCMG) http://www.ccmg-ccgm.org/index.php  

Guidelines and position statements:
http://www.ccmg-ccgm.org/policies_guidelines.php

 

American College of Medical Genetics and Genomics (ACMG) http://www.acmg.net/  

 

Standards, guidelines and policy statements:
http://www.acmg.net/AM/Template.cfm?Section=Publications1  

 

National Society of Genetic Counselors (NSGC) NSGC promotes the professional interests of genetic counselors and provides a network for professional communication. Local and national continuing education opportunities and the discussion of all issues relevant to human genetics and the genetic counseling profession are an integral part of belonging to the NSGC.

http://www.nsgc.org/

 


Patient Support

Support Groups This directory was compiled as a special project of the Canadian Association of Genetic Counsellors and was funded through the generous support of the IODE. The directory is designed as a resource guide for families and professionals seeking information on genetic support groups in Canada. This resource is now maintained by London Health Sciences Centre:

http://www.lhsc.on.ca/Patients_Families_Visitors/Genetic_Support_Directory/

Canadian Down Syndrome Society (CDSS) The Canadian Down Syndrome Society is a national non-profit organization providing information, advocacy and education about Down syndrome.  The CDSS supports self-advocates, parents and families through all stages of life.

http://www.cdss.ca/ 

 

Support Organization for Trisomy 18, 13 and Related Disorders (S.O.F.T.) SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders.

http://www.trisomy.org/ 

 

Spina Bifida and Hydrocephalus Association of Canada The Spina Bifida and Hydrocephalus Association of Canada is a registered charitable organization which strives to improve the quality of life for people affected by spina bifida and hydrocephalus through support, education, advocacy and research.

www.sbhac.ca   

 

A Heartbreaking Choice This website supports women who have undergone a pregnancy termination due to a poor prenatal diagnosis, problems with their own health, or for the health of another fetus (selective reduction).

http://www.aheartbreakingchoice.com/

Other Frequently visited support sites: Canadian Hemochromatosis Society http://www.cdnhemochromatosis.ca/  

Alzheimer Society Ontario http://www.alzheimer.ca/on

Willow Breast Cancer Support Canada http://www.willow.org/

Willow Breast Cancer Support Canada –  Hereditary Breast and Ovarian Cancer http://www.inourgenes.ca/

 

 

 

Disclaimer

Currently, the website is attempting to meet the information needs of healthcare providers. As a result, when choosing content and terminology for the site, we have assumed that the reader has a certain amount of medical knowledge.

Healthcare providers must use their own clinical judgment in addition to the information presented herein. The authors assume no responsibility or liability resulting from the use of information on this website.

All healthcare providers using this site are encouraged to consult local genetics clinics, medical geneticists, or specialists for clarification of questions that arise relating to specific patient problems.

External links are selected and reviewed at the time a page is published. However, GEC-KO is not responsible for the content of external websites. The inclusion of a link to an external website from GEC-KO should not be understood to be an endorsement of that website or the site’s owners (or their products/services).

We strive to provide accurate, timely, unbiased and up-to-date information on this site, and make every attempt to ensure the integrity of the site. However, it is possible that the information contained here may contain inaccuracies or errors for which neither GEC-KO nor its funding agencies assume responsibility.