Fetal Alcohol Spectrum Disorders (FASD)
The Center for Disease Control (CDC) provides information on FASD including how it is caused,…
NIPT Summary of Recommendations
This policy priority helps to summarize recommendations that are helpful to providers when navigating the…
National Organization for Rare Disorders (NORD)
NORD aims to provide resources to those with rare diseases and 'lift up' the rare…
Familial Hypercholesterolemia
Familial Hypercholesterolemia (FH) affects around 1 in 250 people which makes it one of the…
Cancer in Children
Cancer is the second leading cause of death in children ages 1 to 14. The…
What is Sickle Cell Disease?
Sickle cell disease is a genetic disorder that changes the shape of red blood cells,…
All Things Thalassemia
Thalassemia is a broad genetic disorder relating to an imbalance of alpha and beta proteins…
Expanded carrier screening for reproductive risk assessment: An evidence-based practice guideline from the National Society of Genetic Counselors
Expanded carrier screening (ECS) helps healthy individuals screen for autosomal recessive and x-linked conditions that…
Clinical genetic counseling and translation considerations for polygenic scores in personalized risk assessments: A Practice Resource from the National Society of Genetic Counselors
Polygenic scores (PGS) help estimate one's genetic risk for many conditions through a large amount…
18-22 Week Ultrasound Results
Details of what a 'normal' ultrasound looks like, and common findings of organs and structures…
GINA & You: Understanding GINA, The Genetic Information NonDiscrimination Act of 2008
This 2 page document contains quick and easy to understand information about GINA - including…
MotherToBaby
MotherToBaby is both an English and Spanish resource to help all individuals, families, providers, and…
Noninvasive prenatal screening (NIPS) for fetal chromosome abnormalities in a general risk population: An evidence-based clinical guideline of the American College of Medical Genetics and Genomics (ACMG)
This is an update to the 2016 statement by ACMG (American College of Medical Genetics),…
Screening and Diagnosis of Mental Health Conditions During Pregnancy and Postpartum
The American College of Obstetricians and Gynecologists (ACOG) in this June 2023 provider guideline discuss…
Clinical, technical, and environmental biases influencing equitable access to clinical genetics/genomics testing: A points to consider statement of the American College of Medical Genetics and Genomics (ACMG)
The American College of Medical Genetics and Genomics (ACMG) has listed multiple points to consider…
Medline Plus Genetics: Consumer-friendly information
Explore specific genetic conditions, genes, chromosomes, or learn more about genetics from the basics of…
Should I Get Genetic Testing for Melanoma?
Protecting oneself from skin cancer is vital and the most serious skin cancer is melanoma.…
Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs
LEND (Leadership Education in Neurodevelopmental Disabilities) continues to improve the health of infants, children, and…
Is Lung Cancer Genetic?
Lung cancer is primarily caused by smoking, but roughly 8% of the time it is…
What to Expect from a Pre-Test Consultation
What is pretest genetic counseling? What can I expect in my appointment? This video gives…
What to Expect from a Post-Test Consultation
What is post-test genetic counseling? What can I expect in my appointment. This video provides…
Patient Stories
Where can I find stories from individuals with genetic conditions? Grey's genetics provides information on…
Male breast cancer support
Where can I find resources for men with hereditary and non-hereditary breast cancer? HIS Breast…
When A Child Dies: a Guide for family and friends – English
The loss of a child can lead to isolation for the grieving family. This brochure…
When A Child Dies: a Guide for family and friends – Spanish
The loss of a child can lead to isolation for the grieving family. This brochure…
Helping Children Cope with the death of a loved one – Spanish
Telling your child about the loss of a loved one can be difficult. This brochure…
Helping Children Cope with the death of a loved one – English
Telling your child about the loss of a loved one can be difficult. This brochure…
Navigating caregiving resources
This webpage provides information for caregivers about the available resources and support that they can…
Concurrent Care for Children
The National Hospice and Palliative Care Organization website gives information on the Concurrent Care for…
Find A Genetic Counselor
If interested in genetic counseling services, the Find a Genetic Counselor website can be used…
Myriad Gene Risk Table
The Myriad Genetics Gene Table provides information about different genes that are known to be…
Living with Klinefelter Syndrome/47,XXY
The Living with XXY website provides information and resources to people with Klinefelter Syndrome and…
How do I tell my children about my cancer gene mutation?
This brochure provides tips and guidance with parents about how to share their positive cancer…
The Genes Between Us: Your Guide to Sharing Genetic Test Results with Relatives
Where can I find resources and support for hereditary cancer? FORCE helps previvors and survivors…
General Cancer Support
Where can I find support for hereditary cancer or cancer in general? A Fresh Chapter…
Heart Conditions
What do genetics have to do with heart conditions? How is genetic information helpful in…
Genetics, Disease Prevention and Treatment FAQ
Why is family history important to my medical care? What can family medical history tell…
Questions to Ask your Genetic Counselor
How can I prepare for my genetic counseling appointment? Are there common questions I should…
Genetic Testing for Transgender People
I'm transgender. What can I expect from genetic care and evaluation? Genetic providers support gender…
How to Communicate with Your Family Members About Your Genetic Test Results
How do I tell my family about my genetic test results? Genetic Counselor, Mary-Frances Garber,…
Cancer and Genetics
What does genetics have to do with cancer? Watch or read about the intersection of…
Direct-To-Consumer Testing: What you Need to Know
What do I need to know about direct-to-consumer testing? Read about DTC topics and FAQ…
What is genetic counseling and genetic testing
What is genetic counseling? What are the benefits of genetic testing? Answers to your frequently…
Beyond the Brochure
What are current practices in prenatal genetic counseling? This is provider level resource outlining standard…
Patient guides to risk assessment and genetic testing
What is genetic risk assessment? What do I need to do before doing genetic testing?…
Carrier screening
What is genetic carrier screening? What are recessive conditions? What is expanded carrier screening? This…
Are Hereditary Cancers Passed Down by Both Parents Equally?
How is hereditary cancer passed on in a family? Read this article by genetic counselor,…
Spinal Muscular Atrophy: Everything you need to know about being a carrier.
What does it mean that my genetic test showed I am a carrier for a…
About Newborn Screening.
Where can I find more information on Newborn Screening? Visit this site, Baby's First Test…
Newborn screening outcomes
What does a negative test mean in Newborn Screening? What does a positive test mean…
Guide for patients from patients
This is site that can be used extensively as a Resource for a family with…
Fragile X syndrome – An Overview for Families and Providers
This brochures provides detailed information on Fragile X syndrome. It covers details like what is…
Chromosomal Microarray: Test Information for Families
This is a brochure that describes microarray in patient friendly langauge. This brochure can be…
Care for the Caregiver
On this webpage of Today's Caregiver website you can find a variety of articles about…
Caregiver 101
Today's Caregiver provides a variety of articles for caregivers. The articles cover many different subjects…
The Compassionate Friends: Supporting Family After a Child Dies
The Compassionate Friends website provides a variety of resources to families who have lost a…
What to Expect at Your Genetics Appointment ?
In this brochure you can find out more information about what to expect during a…
When Your Child is in Pain – English
If you have questions about how to help your child during times of pain this…
When Your Child is in Pain – Spanish
If you have questions about how to help your child during times of pain this…
Talking with Your Child About His or Her Illness
In this brochure you can find information about how to talk with your child about…
Talking with Your Child’s Doctor – English
Doctors visits can be complex with the many questions they may ask and the amount…
Talking with Your Child’s Doctor – Spanish
Doctors visits can be complex with the many questions they may ask and the amount…
Creating Your Advance Directive
An advance directive helps you speak for yourself and let others know what choices you…
Financial Matters
There are many different considerations one has to make while being a caregiver and one…
Hospice Care
Hospice care is a type of care you or a loved one may receive at…
Palliative Care
On this webpage you can find more information about palliative care. It provides information to…
Coping with Grief
Learn about coping with grief and loss. Here you can find more information about the…
Choosing types of care: Palliative, hospice, and bereavement
There are many different types of care you or a loved one may receive during…
Preparing for being a caregiver
If you are new to being a caregiver to someone in your life, this webpage…