CHD Awareness Week 2026
Keep every person born with a heart defect connected to the right care across a lifetime.
The risk is not only clinical complexity. It is loss of continuity.
People with congenital heart disease may move among pediatric cardiology, primary care, emergency care, obstetrics, adult congenital specialists, and other services over decades. Each transition creates a chance for records, follow-up, or specialty relationships to break.
Executives can use CHD Awareness Week to test whether their system can recognize a congenital heart history, route the patient to appropriate expertise, and preserve a portable plan across settings.
A reliable pathway also requires a portable congenital heart record. The patient and every treating team should be able to find the diagnosis, anatomy, prior procedures, devices, medications, emergency considerations, current congenital cardiologist, and next follow-up date without reconstructing years of history. Leaders should assign ownership for maintaining that summary and test whether it follows the patient across emergency, inpatient, ambulatory, and external referrals.
Access review should include distance to an adult congenital heart disease program, insurance network limits, language access, transportation, digital access, and pregnancy counseling when relevant. Stratify missed transitions and unclosed referrals so the system can see whether continuity failures concentrate in particular regions or populations.
Identify patients with known CHD who lack a documented congenital cardiology relationship or transition plan, then create a reliable outreach and referral route.
CDC’s clinician toolkit describes congenital heart defects as lifelong conditions affecting approximately 2.4 million people in the United States.
Figures are summarized from the authoritative sources linked below. Definitions and denominators should be read with each source.
Design for lifelong congenital cardiac care, not episodic rescue.
The route should connect early detection, specialty follow-up, primary care, and life-stage transitions without making the patient rebuild the story each time.
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Detect and document
Record the specific defect, prior procedures, current anatomy and physiology, implanted devices, care team, and follow-up needs in a retrievable location.
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Connect to specialty care
Build an accessible referral pathway to pediatric or adult congenital cardiology and use a directory when local expertise is not available.
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Plan the transition
Begin pediatric-to-adult transition work before the transfer date, including self-management skills, insurance, records, and the first receiving appointment.
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Protect every touchpoint
Prompt emergency, primary care, and obstetric teams to ask about congenital heart history and reconnect patients who have fallen out of specialty care.
Reliability rule: A referral order is not a transition plan. The system needs confirmation that the receiving relationship was established.
Measure connection to care across age and setting.
Use measures that reveal where patients leave the pathway, with careful attention to geography, insurance, language, and age transition.
Specialty connection
Identify patients with CHD who have a documented congenital cardiology relationship and current follow-up plan.
Transition completion
Track whether adolescents and young adults reach an adult congenital provider after leaving pediatric care.
Referral closure
Monitor referrals that remain unscheduled, declined, or incomplete and record the barrier.
Portable plan
Audit whether critical CHD history and emergency considerations are visible across care settings.
Carry the heart history, the risk, and the next relationship forward.
A strong CHD handoff gives the receiving team enough information to act and gives the patient a clear point of contact.
Pediatric to adult congenital care
- Prepare a concise clinical summary and transition readiness assessment.
- Schedule the first adult congenital visit before pediatric follow-up ends.
- Confirm attendance and address insurance, transportation, or understanding barriers.
Acute care to congenital specialist
- Identify the specific defect and prior interventions at registration or triage.
- Contact the appropriate congenital cardiology resource when the clinical situation requires it.
- Send the encounter summary and unresolved issues to the ongoing care team.
System to patient and family
- Provide a plain-language explanation of the next step and why it matters.
- Share the named contact, appointment details, and record-transfer plan.
- Use teach-back and document remaining barriers.
The patient should not be the only durable interface among specialties.
Ask whether the organization can keep a lifelong condition visible.
Bring pediatric, adult, ambulatory, emergency, and data leaders to the same review.
| Signal | Executive question | Accountable owner | Review cadence |
|---|---|---|---|
| Identification | Can every care setting reliably recognize a patient’s congenital heart history? | Clinical informatics and quality | Quarterly audit |
| Connection | How many patients with known CHD lack an appropriate specialty relationship? | Cardiovascular service line and population health | Monthly |
| Transition | Does the pediatric-to-adult route include a completed receiving visit? | Pediatric and adult congenital program leaders | Monthly |
| Equity | Which groups face the longest travel, wait, or referral barriers? | Access leadership and community partnerships | Quarterly |
Reconnect one population at risk of falling out of care.
Start with a defined cohort, such as young adults leaving pediatric care or adults with CHD seen in the emergency department without documented follow-up.
Find the gap
- Define the cohort and validate the patient list with clinicians.
- Map specialty capacity, referral rules, and known barriers.
- Set baseline measures for connection and referral closure.
Build the bridge
- Create a standard summary and named referral pathway.
- Assign outreach ownership and barrier-resolution support.
- Test confirmation of the first receiving appointment.
Make continuity visible
- Compare completed connections with baseline.
- Stratify failures by age, location, insurance, and language.
- Embed the successful workflow in transition and acute-care practice.
A repaired heart still needs a connected care system.
CHD Awareness Week should leave leaders with a practical question: can this organization recognize the condition, find the right expertise, and keep the next relationship intact across a lifetime?
Authoritative resources
- CHD Awareness Week 2026 organizer update, Adult Congenital Heart Association
- CHD Information and Support, Adult Congenital Heart Association
- ACHD Clinic Directory, Adult Congenital Heart Association
- Congenital Heart Defects Clinician Toolkit, Centers for Disease Control and Prevention
- Critical Congenital Heart Defect Screening, Centers for Disease Control and Prevention
- Internal Medicine Resources for Lifelong CHD Care, Centers for Disease Control and Prevention
Source note: The Adult Congenital Heart Association’s 2026 organizer update identifies February 7–14, 2026 and uses the name “CHD Awareness Week.” ACHA advocacy materials also use “Congenital Heart Defect Awareness Week.” This brief follows the current organizer wording and defines CHD in the page copy.
Safety note: This executive brief is general system guidance, not individual medical advice. Anyone with severe chest pain, fainting, marked breathing difficulty, blue or gray skin, or another possible emergency should call 911 or seek emergency care immediately.
No explicit 2026 campaign theme was found on the ACHA organizer pages. The continuity framework is original executive guidance informed by ACHA and CDC resources.