#251 Diversifying Genetic Research with 23andMe
Accurate interpretation of genetic test results relies on a vast knowledge base of genetic data…
Patient’s Guide to Ovarian Cancer
The National Ovarian Cancer Coalition has helped to create an animated patient guide to everything…
#247 Duchenne Muscular Dystrophy: Exon Skipping
Duchene and Becker Muscular Dystrophy are genetic disorders noted for progressive muscle weakness that can…
How to Decide About Prenatal Genetic Testing
This 4 minute video walks through the decision making process for someone considering prenatal genetic…
National Organization for Rare Disorders (NORD)
NORD aims to provide resources to those with rare diseases and 'lift up' the rare…
Spanish Language Genetic Counseling: Research and Resources
Language concordance has shown to help build rapport, trust, and understanding of information within a…
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…
Prenatal Genetic Testing Options
This 3 minute video explains the difference between screening and diagnostic options in prenatal genetic…
All Things Thalassemia
Thalassemia is a broad genetic disorder relating to an imbalance of alpha and beta proteins…
Navigating Barriers in LGBTQ+ Genetic Care
LGBTQ+ genetic counselors, advocates, and educators address overcoming barriers to delivering affirming care for LGBTQ+…
Lynch Syndrome Explained by a Genetic Counselor
Around 1/300 adults carry a genetic change that constitutes Lynch syndrome, and it accounts for…
MotherToBaby
MotherToBaby is both an English and Spanish resource to help all individuals, families, providers, and…
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…
Disorders of Sex Chromosomes
This 12 minute video discusses the genetics of how sex chromosome disorders can occur and…
Genetic Discrimination and GINA: Will Genetic Testing Affect My Insurance?
This 4 minute video explains the Genetic Information Non Discrimination Act (GINA), including its history,…
Trisomy 13 and 18 – Pediatric Genetics
This 6 minute video explains how Trisomy 13 (Patau) and Trisomy 18 (Edward) syndrome occurs,…
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),…
What is Down Syndrome (Trisomy 21?)
This 6 minute video explains how Down syndrome occurs, the three different ways someone could…
Medline Plus Genetics: Consumer-friendly information
Explore specific genetic conditions, genes, chromosomes, or learn more about genetics from the basics of…
#218 LEND Program with Betsy Humphreys, Karen Volle & Karina Mancini
LEND (Leadership Education in Neurodevelopmental Disabilities) is monumental in helping cultivate a culturally competent work…
Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs
LEND (Leadership Education in Neurodevelopmental Disabilities) continues to improve the health of infants, children, and…
Self-Love with Megan Logan, MSW, LCSW
How can parent caregivers thrive in their role? Megan Logan, MSW, LCSW, mental health counselor…
What to Expect from a Post-Test Consultation
What is post-test genetic counseling? What can I expect in my appointment. This video provides…
In-home therapy during Covid-19 pandemic
How do I navigate in-home therapy and care in the age of COVID? Liz Gallagher,…
Caring for yourself while caring for your child
How do parents of children with complex medical conditions cope? Katherine Aravamudan, a licensed counselor,…
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…
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…
What is leukemia?
This 4-minute TED-Ed video discusses a specific type of cancer called leukemia. Leukemia is the…
What Is Leukemia?
This 2-minute video put together by Cincinnati Children's gives a brief overview of a specific…
Understanding the Relationship Between Cancer and Genetics
This 8-minute video answers several different questions about hereditary cancer and genetic testing for hereditary…
Genetic Testing For Inherited Risk For Cancer
This 3-minute animated video provides a brief overview of hereditary cancer. The video discusses what…
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…
#102 Seth Rotberg on Huntington Disease
What is Huntington's Disease? What is it like to live with it as part of…
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…
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,…
Part 4: Understanding Medical Bills
How can I make sense of this medical bill? Watch this 3 min video and…
Newborn screening outcomes
What does a negative test mean in Newborn Screening? What does a positive test mean…
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…
Fragile X syndrome – An Overview for Families and Providers
This brochures provides detailed information on Fragile X syndrome. It covers details like what is…
Fragile X Syndrome (FXS) 10 Things You Did Not Know
This 4 minute 30 seconds talks about 10 facts about Fragile X syndrome. It is…
Guide for patients from patients
This is site that can be used extensively as a Resource for a family with…
Chromosomal Microarray: Test Information for Families
This is a brochure that describes microarray in patient friendly langauge. This brochure can be…
The Compassionate Friends: Supporting Family After a Child Dies
The Compassionate Friends website provides a variety of resources to families who have lost a…
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…
Today’s Caregiver magazine and caregiver.com interviews Susan Peppers, Vice President of Express Scripts Pharmacy
In this 12-minute podcast you can hear from Susan Peppers about pharmacists and why it…
Today’s Caregiver magazine and https://caregiver.com interviews Michael Jordan, Founder and CEO of CircleOf Inc.
In this 14-minute podcast you can hear from Michael Jordan, founder of CircleOf Inc. about…
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…
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…