Center for Human Genetics

P.O. Box 770
Bar Harbor, ME 04609

ph: 207-288-5815
fax: 207-288-5815

Links

ADDITIONAL RESOURCES:  

The links below will connect you to other internet resources for further information on specific genetic conditions and topics of interest.

Genetic Alliance                                      

www.geneticalliance.org

Founded in 1986 as an affiliation of genetic support groups, now the world’s leading advocacy organization committed to transforming health through genetics.  Includes a Disease InfoSearch tool and their downloadable booklet, Understanding Genetics: A Guide for Patients and Professionals

 


Genetics Home Reference

ghr.nlm.nih.gov

Consumer-friendly information on more than 350 health conditions, diseases and syndromes, along with a handbook and glossary to help explain genetic terms and concepts.  Also searchable by specific gene name or chromosome

 


GeneTests/GeneClinics

www.genetests.org

A medical genetics information resource developed for physicians, other healthcare providers, and researchers; contains latest information on diagnosis, testing, and treatment options (including research programs) for recognized genetic disorders

 


March of Dimes “Genetics & Your Practice”

www.marchofdimes.com/gyponline/index.bm2

Practical information and resources to assist healthcare providers in integrating genetics into their routine patient care.  Includes sections on genetic testing and screening, family health and social history-taking, and referral to genetic services

 


National Coalition for Health Professional Education in Genetics

www.nchpeg.org

An "organization of organizations" committed to a national effort to promote health professional education and access to current information about advances in human genetics.  Includes core principles and core competencies in genetics for nursing and medical education programs, along with a genetics search engine GROW (Genetic Resources On the Web)

 


National Human Genome Research Institute "Genetics and Genomics for Patients and the Public"

www.genome.gov/19016903

Comprehensive series of FAQs that provide additional information and resources on the following topics:Genetic and Genomic Science, Genetic Disorders, Genetic Testing, Genetic Counseling and Evaluation, Clinical Research, Genetic Research, Family History, Disease Prevention and Treatment, Online Health and Support Resources, Issues in Genetics and Health

 


National Newborn Screening and Genetic Resource Center

genes-r-us.uthscsa.ed

Information and resources for health professionals, the public health community, and consumers.  Includes Genetics in Primary Care, an online curriculum module that provides a series of teaching cases, developed to be representative of patients seen in primary care, while also allowing for the demonstration of genetics issues and principles.  Major topics include breast and ovarian cancer, cardiovascular disease, colorectal cancer, congenital hearing loss, dementia, developmental delay, iron overload, and ethical/legal/social issues

 


National Organization for Rare Disorders

www.rarediseases.org

Searchable database with reports on more than 1150 rare conditions, covering symptoms, causes, and therapies, with links to support groups and investigative projects

 


Understanding Gene Testing

www.accessexcellence.org/AE/AEPC/NIH

An online booklet that represents an effort by the National Cancer Institute and the National Center for Human Genome Research to provide basic information about gene testing and key genetic concepts.  Also provides answers to a number of frequently asked questions about the science of genetics, potential benefits and risks of gene testing

 


 


The Center's mission is to help Maine's families take charge of genetic disorders through education, support and referral.

 

Genetics and molecular biology are rapidly advancing sciences. 

 

Genetic knowledge and understanding have become increasingly important in the diagnosis, prevention, management, and treatment of a growing number of diseases and conditions.

 

Today, healthcare and medical practice frequently include genetic information as an integral part of a comprehensive evaluation.

 

As part of our mission, the Center for Human Genetics strives to enhance public and professional access to the broad range of genetic educational and resource material available over the internet. 

 

Included here are a few of the many excellent websites now devoted to genetic information specifically as it relates to healthcare.

 

 

 

 

 

 

 

Please feel free to contact the Center by phone or email, if you have any questions, would like additional information or a copy of our brochure, or would like to schedule an appointment.

Messages will be returned as promptly as possible.

 

 

 

 

 

 

 

 

 

Illustrations courtesy of NHGRI http://www.genome.gov/17516876

Copyright Center for Human Genetics. All rights reserved.

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P.O. Box 770
Bar Harbor, ME 04609

ph: 207-288-5815
fax: 207-288-5815