CONQUERING CHD
We exist to conquer the most common birth defect
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Patient & Family Access to Data and Decision-Making Information
Learning you or your child has congenital heart disease can be devastating. This new diagnosis comes with a lifetime of life-or-death choices. A key belief in our work is that patients and families should have access to hospital data and other information needed to make informed healthcare decisions. To facilitate this, we created several resources and provide free access to the CHD community on our website.
Hospital Navigator is a website for patients with congenital heart disease and their families, to learn about surgical outcomes and program availability at hospitals across the United States. It uses existing data and provides a framework for patients and families to have educated conversations with their care teams. www.conqueringchd.org/learn/hospital-navigator
Available in English and Spanish for families, teen patients, and adult patients, our Guided Questions Tools provide a starting point for conversations with the care team. The suggested topics are sorted by common conversations across the patient’s lifespan: learning about care team/care center, information about upcoming procedures or hospital stays, discussing treatment options, looking ahead/preparing for the future. www.conqueringchd.org/learn/guided-questions
Held annually, we host a Summit on Transparency and Public Reporting in Pediatric and Congenital Heart Disease. This forum provides a place for patients, families, providers, healthcare administrators, insurance payors, and news media to discuss the latest trends in CHD transparency and reporting. It is also the only forum in which patients and families can participate in these discussions, thus moving the landscape forward on their behalf.
www.conqueringchd.org/involvement/2020-summit-on-transparency-and-public-reporting/
Patient and Family Education
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
Patient and Family Support
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.
Advocacy
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!
Research
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.
Where we work
External reviews

Photos
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Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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How is your organization using feedback from the people you serve?
To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve
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Which of the following feedback practices does your organization routinely carry out?
We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We look for patterns in feedback based on demographics (e.g., race, age, gender, etc.), We look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting feedback
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
CONQUERING CHD
Board of directorsas of 04/03/2023
David Kasnic
Driver Industrial
Term: 2021 - 2023
David Kasnic
Driver Industrial Safety
Andy Kay
Slalom Consulting
Amy Reczek
Sales/Business Consultant
Megan Setzer
Senior Workflow Advisor, XSOLIS
Tom Eby
Retired
Rita Higgins
Medtronic
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Not applicable -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
No data
No data
Sexual orientation
No data
Disability
No data