Medical Professionals
At DSDN, our goal is to provide medical professionals the tools and resources needed to discuss Down syndrome in a way that is supportive and educational at every stage:
Resources to Discuss a Down Syndrome Diagnosis
The most up to date evidence available to guide your practice in delivering and discussing a diagnosis or screen result.
Pre-Decision Resources for Patients
With a newly confirmed or likely diagnosis often come more questions than answers. We've compiled a list of organizations that provide support and resources for patients with a new diagnosis.
Resources for Expectant and New Parents
Accurate, up to date information, support and connections for parents navigating a new diagnosis.
Health Supervision For Children & Adolescents with Down syndrome
From the American Academy of Pediatrics, updated health supervision guidelines for children and adolescents with Down syndrome.
Resources to Discuss a Down Syndrome Diagnosis
From American Journal of Medical Genetics: "We sought to provide evidence-based recommendations to physicians on how to best deliver a prenatal diagnosis of DS to expectant parents."
From the American Academy of Pediatrics: "Pediatricians may be asked to counsel a family whose fetus has been identified with or is at increased chance of having Down syndrome ... The clinician should be prepared to respond to questions, review information the family has received, and assist in the decision-making process."
From the Down Syndrome Diagnosis Network (DSDN), a quick guide to discussing a Down syndrome diagnosis, following the guidelines outlined in the 2022 Health Supervision Guidelines. These materials can be requested free of charge.
Pre-Decision Resources for Patients
The National Parents First Call Program is a volunteer group of trained parent mentors and a genetic counselor available 24/7 to listen, share, answer questions, and provide valuable information.
The mission of the National Down Syndrome Adoption Network (NDSAN) is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family.
As the nation's clearinghouse & comprehensive training center for sharing accurate, balanced, and up-to-date information about genetic conditions, Lettercase leads the effort to make sure all expectant parent and providers have the resources and support they need at the moment of diagnosis.
Resources for Expectant and New Parents
DSDN offers online groups for parents to connect with other parents at similar stages of the diagnosis journey. Our trained support team hosts private, moderated groups for new and expectant parents, as well as topical subgroups.
Around the world, there are organizations focused on providing in person support, resources and connections for people with Down syndrome. Not sure how to connect? DSDN can help you find the local support for new parents.
As the nation's clearinghouse & comprehensive training center for sharing accurate, balanced, and up-to-date information about genetic conditions, Lettercase leads the effort to make sure all expectant parent and providers have the resources and support they need at the moment of diagnosis.
Health Supervision For Children & Adolescents with Down syndrome
From the American Academy of Pediatrics: "Pediatricians play an important role in the care of children and adolescents with Down syndrome and their families. Down syndrome is the most common chromosomal cause of intellectual disability, and there has been a significant improvement in quality of life for affected people. Awareness of the issues important to affected children, adolescents, and their caregivers can make a great difference in outcomes across the lifespan."
DSDN Medical Outreach Team
Our Medical Outreach Team has been working with medical professionals for the last 9 years to improve the diagnosis experience for families.
To date, DSDN has participated in 39 medical conferences throughout the United States and Canada, in 21 states (plus 3 virtual conferences), and have talked about DSDN and/or the patient diagnosis experience directly with over 5,000 medical professionals!
Outside of medical conferences, we have distributed over 4,000 DSDN materials directly to medical professionals and an additional 12,000+ "diagnosis guidelines" cards to local Down syndrome organizations and individuals in support of their own medical outreach efforts.
A Diagnosis Can Go Well
We asked hundreds of parents in our groups about their diagnosis experience and what stood out to them from the conversation with their provider. This video includes the words from practitioners to parents at the time of diagnosis as told by grateful parents.
DSDN Supports Physicians
"This weekend will change the way I counsel patients in the future." While exhibiting at ACOG District II in 2018, DSDN's Medical Outreach team met Dr. Mark Rosing an Obstetrics and Gynecology Chair with over 20 years of experience currently practicing in the Bronx. Watch the video as we discuss how learning about DSDN made a profound impact on the way that he will counsel patients with a new diagnosis in the future.