CONQUERING CONGENITAL HEART DISEASE
This organization has already been registered
Someone in your organization has already registered and setup an account. would you like to join their team?Profile owner : i**o@c***********d.o*g
Mission Statement
About congenital heart disease: 1 in every 100 newborns are born with congenital heart disease, making it the most common birth defect. That means every 15 minutes a new CHD story begins, altering the course of a family’s life in unpredictable ways for a lifetime. Our Mission: At Conquering CHD, we exist to conquer the most common birth defect. We engage, listen, learn, and act. We create visibility and empower all impacted by congenital heart disease. We accomplish this through awareness, knowledge, community, and research.
About This Cause
Every 15 minutes, a family begins their journey with congenital heart disease (CHD). That is 1 out of every 100 babies born, making CHD the most common birth defect. It is also the leading cause of birth defect related infant death and premature death across the lifespan – only 85% of babies born with CHD will live to see their 18th birthday. At Conquering CHD (formerly the Pediatric Congenital Heart Association), we strive to: Give Knowledge: Knowledge is power. Conquering CHD seeks to empower patients and families by providing them with the educational resources they need to achieve the highest quality care available to them. Our programs are designed to reach the parents themselves, while at the same time address necessary changes to patient care systems to promote a culture of engaged patient care. • Host annual “Congenital Heart Legislative Conference” in Washington D.C. • Host “Summit Series on Transparency and Public Reporting,” held bi-annually, rotating among pediatric cardiology centers, nationwide • Created and launched “Guided Questions” patient education tool • Invited faculty at national conferences • Participate in hospital site visits • Created an educational Advocacy “Toolkit” Give a Voice: Conquering CHD seeks to amplify the voice of the CHD community to inform policymakers of the significant public health burden related to CHD. By creating a solid grass-roots foundation, we leverage this voice to successfully inform legislators, administrators, government agencies and other key stakeholders to move forward key policy changes that impact the congenital heart disease community as a whole. • Robust congenital heart advocacy network • Design and implement “action” campaigns • Support advocates to contact their lawmakers • Visit legislative offices in Washington D.C. • Inform national policy • Provide the patient voice to national collaborative committees and meetings including at the Centers for Disease Control and Prevention and the National Institutes of Health and Center for Medicare and Medicaid Services • Sharing of patient stories and blogging portal on our website Give Hope: Conquering CHD understands the desperate need for research to improve outcomes for patients with CHD. We work with federal agencies, medical professionals and investigators to promote patient focused research. We promote patient engagement in research from protocol development and implementation through information dissemination. We also advocate for robust funding mechanisms that address critical gaps in understanding of CHD. • Introduced The Congenital Heart Futures Reauthorization Act in fall of 2015: federal legislation to specifically promote congenital heart disease research funding • Advise in patient-centered research • Collaborate with investigators • Share information about research • “Research Matters” blog We are certainly proud of all we are doing. However, we recognize we cannot achieve our mission, alone. Your support and collaboration is vital to the success of our programs – together, we will “Conquer CHD.”