We couldn’t meet in person in Washington D.C. this year, however, we felt our community would benefit from the incredible content we’d planned. Heart Connection 2022 Virtual Education Series presents all of our favorite topics from the annual conference in an easy-to-attend, easy-to-digest format – for all those impacted by CHD – patients, family members, and care team members. Our educational sessions will include live and pre-recorded presentations and panel discussions featuring experts in the field, as well as the patients and families who experience all aspects of CHD in their daily lives.
Together, we are changing the landscape of congenital heart disease.
Together, we are #ConqueringCHD!
Heart-Brain Connection
Congenital heart disease is never just about the heart. CHD can have vast impacts on other parts of the body and mind. Our Heart Connection webinar series continues in June, as we discuss how CHD impacts the mental health of patients, parents and caregivers, significant others, family members, and our community. Read more about and register for individual webinars below.
-
Neurodevelopment in CHD: Overcoming Obstacles
This webinar focused on neurodevelopmental challenges faced by those with CHD starting with the prenatal diagnosis and risk factors, proven interventions and therapies, and ending with some exciting new research in this area. Patients and families brought questions and their own lived experiences to share with this expert panel! Recorded on June 14, 2022. Read the recap, view the presentation and additional resources.
-
Navigating the K-12 Education System with CHD
This webinar focused on navigating the world of K-12 education with congenital heart disease, including IEPs, 504s, Health Plans, and services and evaluations to ask for. Patients and families brought their questions and their own lived experiences to share with our expert panel! Recorded on June 24, 2022. Read the recap, view the presentation and additional resources.
-
Impacts of CHD on Neurodevelopment: From Infancy to Adulthood
This webinar focused on the impact congenital heart disease has on neurodevelopment, not just in infancy and childhood, but also into adulthood. Patients and families brought their questions and own lived experiences to share with our expert panel. Recorded on June 28, 2022. Read the recap, view the presentation and additional resources.
Step Up & Thrive (Transition)
Congenital heart disease is lifelong, so a successful transition from pediatric CHD care to adult CHD care is crucial. Fewer than 30% of adolescents with CHD successfully transition to adult care, even fewer for those adolescents with CHD in the minority and lower socioeconomic status populations. Our Heart Connection webinar series continues in July as our experts discuss preparing CHD patients for the transfer of care from a pediatric CHD team to an adult CHD team while ensuring they are properly educated about their medical conditions, skills in communication, decision making, self-care, and self-advocacy - with the ultimate goal of medical independence and optimizing the quality of life for those with CHD. Read more about and register for individual webinars below.
-
What is Transition and Why Does it Matter?
This webinar focused on transition. The clinical experts and patient and parent panelists will discuss the process of transition and parent/patient considerations. Patients and families brought questions and their own lived experiences to share with this expert panel! Recorded on August 2, 2022. Read the recap, view the presentation and additional resources.
-
It's Never Too Early to Talk About Transition
This webinar focused on helping kids understand their CHD conditions and learn to handle their care before they reach the official transition process. Patients and families brought questions and their own lived experiences to share with this expert panel! The webinar was live on August 5, 2022. Due to technical difficulties, this webinar was not recorded and is unavailable to rewatch.
Lifelong Care
There is no cure for CHD. Congenital heart disease is a lifelong disease that requires ongoing specialized care. Our Heart Connection webinar series continues in August as our experts discuss issues patients with CHD face as they grow older, including body image, reproductive health, navigating the workplace with CHD, access to care, and the importance of staying in care. Read more about and register for individual webinars below.
-
Advocating, Navigating, and Managing Your Path: School, Work, Disability
Read the recap, view the presentation and additional resources.
-
Managing Care
For many, going off to college is the first major step toward independence. It could mean leaving home for the first time, living in a new city where you don’t know anyone, or starting a whole new life. Add a chronic illness into the mix, like CHD, and it can get tricky. Check out these 10 tips on how to set yourself up to thrive in college.
-
Reproductive Health: Body Image and Family Planning Pregnancy and CHD
Coming September 2022!
-
Staying in Care
Coming November 2022!
Confidence in Care
Patients and families deserve to know they are receiving the best care for them/their children. Our Heart Connection webinar series continues this month as experts in the CHD community, parents, and patients discuss important topics like what is transparency and why does it matter, tools to help patients and families navigate their care effectively, and how to understand transparency data. Read more about and register for individual webinars below.
-
Key Tenets, What is Transparency and Why Does it Matter to Me?
Coming September 2022!
-
Transparency tools: Hospital Navigator – How to Use, Why it Matters, Patient Stories of Using it GQT – How to Use it, Why it Matters, Patient Stories of Using it
Coming September 2022!
-
Understanding Transparency Data
Coming September 2022!
Bereavement, Grief, and Loss
Losing a loved one to congenital heart disease is life-altering. Bereaved families are not alone. In October, the Heart Connection webinar series explores topics related to supporting the transition to the bereaved community, grief and mental health, living after loss, and the impact of loss on our care teams. Read more about and register for individual webinars below.
Advocacy
Change happens with our voices raised together. Join our Heart Connection webinar series sessions this month as we explore the impact of legislative advocacy, as well as personal advocacy through the lens of patients, parents and caregivers, and healthcare providers. Read more about and register for individual webinars below.
