CONQUERING CHD

It can be a lot of work taking care of your physical and mental health as a patient with congenital heart disease. We believe that robust, accurate, and relatable educational materials and programming for the patient and family community can in turn help improve engagement, outcomes, and quality of life. Not everyone has a similar capacity, learning style, or desire for information, therefore we present materials across multiple modalities. All resources, programs, and materials are free to the community and available on our website.

CHD Wise is an educational series designed for patients and families, by patients and families. It is a regular opportunity for the community to engage with experts on specific topics, where many CHD families may not usually have access to such experts. Most topics are derived from regular inquiries that Conquering CHD receives from the community. Courses are held virtually, some recorded and some live. www.conqueringchd.org/learn/chdwise.

Conquering CHD maintains a robust educational section on their website. From diagnosis and one’s first learning about CHD, to preparing for surgeries, to resources for school or mental health support, to taking control of your care as you transition to adulthood, the website is relatable and comprehensive. Scientific Advisory Committee members regularly review any clinical materials, and sources are cited when outside resources are shared. Materials specific to populations such as teens, adults, bereaved families, Spanish-speaking families, and caregivers of patients are available.
www.conqueringchd.org/learn/start-here

Navigating life with a hidden, chronic medical disease is quite a roller coaster ride for most people with congenital heart disease. The best support for a CHD patient or family member is another CHD patient or family member! Conquering CHD has several support options for different populations of the community. All support options are free and available both in-person and on our website.
www.conqueringchd.org/involvement/get-connected-connect-with-others/

State Chapters are a program in 16 states. These chapters are run by volunteer Board members and include activities - social and educational - support, and awareness events in their areas. State Chapters also participate in all national programs and events.

The ACHD Support Group serves teens and adults with CHD only. The social media group is a place to meet other patients, share your story, and get advice. This group hosts virtual video chats with sessions specifically for teens only, and adults only. The ACHD Support Group is also a place to get the latest news on trends in ACHD care and programs.

Our Bereaved Families Support Group is based on social media and allows families who have lost a loved one to CHD to connect, grieve, and celebrate together. This group welcomes all family members of deceased patients, regardless of time since the loved one passed away, or their age at the time of passing.

The Spanish-Speaking Support Group is also based on social media and provides an avenue for Spanish-speaking patients and families to connect and receive resources and advice in Spanish. This group is in addition to our Spanish webpage.

The experience of the congenital heart disease patient matters. By telling their story, they can help effect positive change. We believe in helping them find their voice. Conquering CHD hosts an annual conference in Washington, D.C., focused on advocacy at the federal level. The conference is attended by patients, families, providers, news media, and healthcare administrators. Patients and families receive the latest news in areas such as research, surgical and treatment innovation, transparency in the media. Patients, families, and providers alike, participate in advocacy skill-building workshops, including civic education in federal legislation.

This conference also boasts meetings for special populations in the CHD community. Bereaved families look forward to the annual coffee chat. Youth ages 5-12 enjoy time together, CHD-related crafts, advocacy workshops, and friendship with other patients. Teens ages 13-17 find time to connect through apps and games, advocacy panels, and field trips around the city. Adult patients take time to meet each other, compare stories, and continue building their support network. Parents of children with CHD can connect with others through similar lived experience and continue building their support network.

Providers and non-patient/family attendees have the chance to hear directly from patients and families about how CHD affects their lives. The combination of a patient/family member + provider while advocating on Capitol Hill is so powerful!

When people with congenital heart disease consider their future, there are often more questions than answers. Patient-driven research can help inform decision making, result in innovative new treatments, and improve outcomes. We have a multi-faceted approach to research involving advocacy, consulting, and direct funding.

Recently, we've developed a database, InformCHD, to collect patient self-reported information for research purposes. This is the first of its kind, by patients and families, for patients and families.

The first project utilizing the database is a survey to gather more information about the clinical impact of COVID-19 on children and adults with congenital heart disease.