Living with adult congenital heart disease can feel isolating, especially when few people in your immediate circle understand your anatomy, surgical history, or the uncertainties that come with lifelong heart disease. Peer support groups and patient advocacy organizations can make a significant difference in quality of life, emotional well-being, and self-advocacy.
Key ACHD Patient Support Organizations
Trusted organizations and resources for adults with CHD include:
- Adult Congenital Heart Association (ACHA) — achaheart.org — peer support, clinic directory, and advocacy.
- Mended Hearts — mendedhearts.org — in-person and virtual support chapters for cardiac patients.
- CHD-UK and Sisters by Heart — international peer networks with online communities.
- American Heart Association (AHA) — heart.org — patient education and local support programs.
- ACHA's MyHeart Community — an online forum specifically for adults living with CHD.
Have questions about your care?
Speak directly with our team — no referral needed for most consultations.
At Congenital Heart Compass Medical PLLC, we believe that peer support is a meaningful part of comprehensive ACHD care. We help connect patients with appropriate resources and integrate mental health and psychosocial support into our care planning. If you are in New York and looking for both expert medical care and guidance on community resources, we are here to help.
Reviewed by Dr. Pradeepkumar Charla, MD, MBA, FAAP, FACC
Pediatric & Adult Congenital Cardiologist — Congenital Heart Compass Medical PLLC
Last reviewed:
Medical disclaimer: This content is for educational purposes only and is not a substitute for individualized medical advice, diagnosis, or treatment. Always consult a qualified cardiologist for decisions about your congenital heart disease care.