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Weblink to Genetics Home Reference Genetics Home Reference
Consumer-friendly information about the effects of genetic variations on human health. Federally-supported resources, include reviews of more than 800 genetic diseases and more than 1000 genes.


Weblink to NHGRI Learning ResourcesLearning Resources from the NHGRI
Lots of very good resources from the NHGRI, including major sections about The Human Genome Project, Facts Sheets, and educational resources for teachers and students.


Weblink to National Society of Genetic CounselorsFind a Genetic Counselor
The National Society of Genetic Counselors have a searchable database of genetic counselors. Their website also includes some education materials for patients and healthcare professionals.


Weblink to NHGRI Talking GlossaryNHGRI Talking Glossary
Talking glossary of genetic terms developed by the National Human Genome Research Institute. A huge range of definitions is provided by researchers from around the world.


Weblink to Help Me Understand GeneticsHelp Me Understand Genetics
Help Me Understand Genetics is a handbook from the National Institutes of Health that contain useful information about genetics in clear language and provides links to even more online resources. The entire handbook can also be downloaded as a pdf.


Weblink to the Genetic and Rare Diseases Information CenterGenetic and Rare Diseases Information Center (GARD)
A joint project from The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) that provides searchable information about genetic conditions and rare diseases. It also includes a list of FDA-Approved drugs and other medical products for treating rare disease.


Weblink to NORDNational Organization for Rare Disorders - Resources for Parents/Families
The National Organization for Rare Disorders (NORD) is a volunteer organization dedicated to empowering the rare disease community. Again, they have some very nice web resources.


Weblink to ELSIEthical, Legal and Social Implications Research Program
The ELSI Research Program supports examinations and investigations of the ethical, legal and social implications of genetics research.


Weblink to GINAGenetic Information Nondiscrimination Act of 2008
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health.


Weblink to Learn.GeneticsLearn.Genetics, University of Utah
Excellent resources, especially for those involved in education. Includes a catalog of animations, videos, interactive features, and virtual labs.


Weblink to the Dolan DNA Learning CenterDolan DNA Leaning Center
The DNALC provides genetics learning resources for teachers and students.


INFORMATION FOR RESEARCHERS:

Weblink to the ClinVar ACMG recommendations pageClinVar: ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing
Clinvar's dedicated ACMG page - a useful jumping-off point to the Genetic Testing Registry, OMIM, MedGen, and local ClinVar pages for each gene.


Weblink to NCBI GeneReviews General pageGene Reviews
Gene Reviews (updated September, 2018)



Weblink to Children's Cardiomyopathy FoundationChildren's Cardiomyopathy Foundation
The Children's Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy


Cardiomyopathy UKCardiomyopathy UK
Cardiomyopathy UK is a charity providing support and information services, work to raise awareness of the condition, campaign for better access to quality treatment and promote research.


Weblink to Hypertrophic Cardiomyopathy FoundationHypertrophic Cardiomyopathy Foundation
The HCMA is dedicated to improving the lives of those with hypertrophic cardiomyopathy, HCM, preventing untimely deaths and advancing global understanding.


Weblink to Genetics Home ReferenceGenetics Home Reference
Extensive resource about rare and genetic and genetic diseases. The above link leads to their familial hypertrophic cardiomyopathy pages. A link to the main site is provided below as well.


Weblink to Genetic and Rare Diseases Center (GARD) - Familial Hypertrophic Cardiomyopathy ResourcesGenetic and Rare Diseases Center (GARD)
Supported by the NIH, this website has great resources for a huge range of genetic and rare diseases. The above link is to their Familial Hypertrophic Cardiomyopathy resource. A link to the main GARD site is provided below as well.


INFORMATION ABOUT GENETICS AND GENETIC TESTING:

Weblink to Genetics Home Reference Genetics Home Reference
Consumer-friendly information about the effects of genetic variations on human health. Federally-supported resources, include reviews of more than 800 genetic diseases and more than 1000 genes.


Weblink to Learning Resources from the NHGRILearning Resources from the NHGRI
Lots of very good resources from the NHGRI, including major sections about The Human Genome Project, Facts Sheets, and educational resources for teachers and students.


Weblink to National Society of Genetic CounselorsFind a Genetic Counselor
The National Society of Genetic Counselors have a searchable database of genetic counselors. Their website also includes some education materials for patients and healthcare professionals.


Weblink to NHGRI Talking GlossaryNHGRI Talking Glossary
Talking glossary of genetic terms developed by the National Human Genome Research Institute. A huge range of definitions is provided by researchers from around the world.


Weblink to Help Me Understand GeneticsHelp Me Understand Genetics
Help Me Understand Genetics is a handbook from the National Institutes of Health that contain useful information about genetics in clear language and provides links to even more online resources. The entire handbook can also be downloaded as a pdf.


Weblink to the Genetic and Rare Diseases Information CenterGenetic and Rare Diseases Information Center (GARD)
A joint project from The Office of Rare Diseases Research (ORDR) and the National Human Genome Research Institute (NHGRI) that provides searchable information about genetic conditions and rare diseases. It also includes a list of FDA-Approved drugs and other medical products for treating rare disease.


Weblink to NORDNational Organization for Rare Disorders - Resources for Parents/Families
The National Organization for Rare Disorders (NORD) is a volunteer organization dedicated to empowering the rare disease community. Again, they have some very nice web resources.


Weblink to ELSIEthical, Legal and Social Implications Research Program
The ELSI Research Program supports examinations and investigations of the ethical, legal and social implications of genetics research.


Weblink to GINAGenetic Information Nondiscrimination Act of 2008
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health.


Weblink to Learn.GeneticsLearn.Genetics, University of Utah
Excellent resources, especially for those involved in education. Includes a catalog of animations, videos, interactive features, and virtual labs.


Weblink to the Dolan DNA Learning CenterDolan DNA Leaning Center
The DNALC provides genetics learning resources for teachers and students.


INFORMATION FOR RESEARCHERS:

Weblink to the ClinVar ACMG recommendations pageClinVar: ACMG Recommendations for Reporting of Incidental Findings in Clinical Exome and Genome Sequencing
Clinvar's dedicated ACMG page - a useful jumping-off point to the Genetic Testing Registry, OMIM, MedGen, and local ClinVar pages for each gene.


Weblink to Hypertrophic Cardiomyopathy GeneReviews pageGeneReviews
Cirino and Ho. GeneReviews: Hypertrophic Cardiomyopathy Overview (updated January, 2014).


Weblink to Hershberger et al. FDC ReviewHypertrophic cardiomyopathy: from genetics to treatment
AJ Marian. Circulation: European Journal of Clinical Investigation, 2010, April; 40(4): 360–369.

INFORMATION ABOUT VHL syndrome:

Weblink to VHL Alliance WebsiteVHL Alliance
The VHL Alliance is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.


Weblink to VHL Alliance HandbookVHL Alliance - VHL Handbook
A reference handbook for people with von Hippel-Lindau, their families, and support personnel from the VHL Alliance.


Weblink to Genetics Home ReferenceGenetics Home Reference
Extensive resource about rare and genetic and genetic diseases. The above link leads to their VHL syndrome disease pages. A link to the main site is provided below as well.


Weblink to Genetic and Rare Diseases Center (GARD) - VHL Syndrome ResourcesGenetic and Rare Diseases Center (GARD)
Supported by the NIH, this website has great resources for a huge range of genetic and rare diseases. The above link is to their VHL syndrome resource. A link to the main GARD site is provided below as well.


Weblink to CHOP VHL syndrome resouceCHOP Pediatric Resources
Extensive resource on a range of childhood diseases from the Children's Hospital of Philadelphia. The above link leads to their VHL syndrome pages.


INFORMATION ABOUT BRUGADA SYMDROME:

Weblink to Mayo Clinic's Brugada Syndrome PagesMayo Clinic Patient Health Care and Info
Great patient resources, with lots of useful information about a wide range of diseases. The Brugada Syndrome pages are particularly good, and have very useful information on causes, diagnosis, and treatment.


Weblink to The British Heart FoundationThe British Heart Foundation
Founded in 1961 by a group of medical professionals, the BHF website has a large online catalog on all things heart-related.


INFORMATION ABOUT CANCER:

Weblink to About Cancer from the NCIAbout Cancer from the NCI
Fantastic resource all about cancer from the National Cancer Institute.


Weblink to Cancer.Net Breast Cancer PagesCancer.Net
Direct link to the Breast Cancer pages at Cancer.Net. Very useful collection of resources and detailed information for patients with breast cancer, and their families


Weblink to The Surveillance, Epidemiology, and End Results (SEER) Program The Surveillance, Epidemiology, and End Results (SEER) Program
The Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute works to provide information on cancer statistics in an effort to reduce the burden of cancer among the U.S. population.


Weblink to The Susan G. Komen Breast Cancer OrganizationThe Susan G. Komen Breast Cancer Organization
Large online resource, with facts and figures about breast cancer, treatment, and research.


Weblink to BreastCancer.org Breastcancer.org
Breastcancer.org is a nonprofit organization that aims to help women and their loved ones make sense of the complex medical and personal information about breast health and breast cancer.


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